The upside to having cancer is you get spoilt rotten! And for parents of a child with cancer, the upside is we get to see family and friends more often than we normally would. Leo has had a better day at the hospital...still a little grumpy after the GA but more because the anaesthetist woke him from his slumber, as opposed to the GA itself, I think. And then he was able to play at home with my cousin and her partner for absolutely ages, with whom we all get along with and although we did get to see them in Spain back in February, Nicola and Debs have been so supportive since this whole adventure started.
We all needed support this evening (some more than others!) as there's a huge trampoline in the garden which Leo insisted we all had to go on with cries of 'show us what you've got!!', and much fun was had by all. Photos to follow.... I have to say that Nicola and Debs clearly practice their trampolining skills as they were pretty good and totally outshone both PJ and I (although PJ would probably not agree with that statement, being competitive as he is!!)
So it's Friday tomorrow and so now it's only five weeks to go with Leo's radiotherapy. To our surprise, this first week of Leo's radiotherapy has gone quite quickly despite the immense stress, and I think part of that is because we've had Martina here, followed by my cousin, Nicola and Debs, her partner. Leo has impressed us in the mornings and has coped pretty well with not having anything to eat until after 2pm, sometimes 3pm and I reckon that by the end of next week, we'll have it all down to a fine art in terms of the GA and post-sleep recovery processes!
We popped into the apartment very near the Royal Marsden which we'll be moving to shortly and it will be a fantastic base for us during the latter part of this section of the protocol at the Marsden. Whilst Leo still has a lot of energy, it's just fabulous that he's able to run about, play and make good use of the swing, amazing garden and the massive trampoline here at this house and then once he starts to get very tired, which is inevitable with radiotherapy to the brain and head, the apartment will be great. We're very fortunate to have been able to stay here at Donna's home (another cousin) whilst she's on holiday and also very fortunate to have a wide and growing circle of support from all over the place.
Thursday, August 14, 2008
Wednesday, August 13, 2008
Muchos, Muchos, Muchos Gracias
Leo's best friend from school, Martina, has now gone back to her hotel with her mum and dad...and has made Leo a very happy boy. We're very fortunate to have spent two beautiful, relaxing evenings with Martina's wonderful and generous family, and words cannot express here about how grateful we are to them. They've been here to see Leo and we cannot believe how fortunate we are to have met their acquaintance. Muchos gracias Martina, Mercedes y Paco.
As for the hospital, things always get worse before they get better and so Tuesday was bad again, followed by a somewhat better day today. The anaesthetists gave Leo a mild sedative at the same time as the GA and so this helped him sleep a little longer to get rid of the GA before waking up. He was still quite angry and freaked out and the ward even gave us the male nurse today, thinking this may help...not sure if it did though. But hey, we're 10% down and over a week into things here so the radiotherapy will be over before we know it, and then the chemo will be over and then life begins again...
Having visits from supportive people is vital to our sanity and so this week could have been a lot worse. PJ and I also both feel the team at the Royal Marsden are very well on top of things and so we feel Leo's is in the best hands possible at the moment.
Leo will have to hold on to the new memories of blowing bubbles with Martina, jumping and laughing on the trampoline (or elasticated bed, as it's translated in Spanish), and watching Dora, Diego, Mickey Mouse and Handy Manny with Martina, until that day we can go back to Spain and re-establish a normal life for ourselves again. It seems a very, very long way away that we will even be able to think about going back but we have to for Leo and for ourselves too. Plus we've made firm friends in Martina's lovely parents, with whom we've enjoyed much laughter and fun, as well as much talking about all sorts of topics from rhabdomyosarcomas to living abroad to Michael Moore!
Muchos gracias Martina, Mercedes y Paco. You coming to visit us in the UK has lifted us all, not just Leo, and has given us much hope for the future to come.
Tomorrow's another day so let's see what it has in store for us all....
As for the hospital, things always get worse before they get better and so Tuesday was bad again, followed by a somewhat better day today. The anaesthetists gave Leo a mild sedative at the same time as the GA and so this helped him sleep a little longer to get rid of the GA before waking up. He was still quite angry and freaked out and the ward even gave us the male nurse today, thinking this may help...not sure if it did though. But hey, we're 10% down and over a week into things here so the radiotherapy will be over before we know it, and then the chemo will be over and then life begins again...
Having visits from supportive people is vital to our sanity and so this week could have been a lot worse. PJ and I also both feel the team at the Royal Marsden are very well on top of things and so we feel Leo's is in the best hands possible at the moment.
Leo will have to hold on to the new memories of blowing bubbles with Martina, jumping and laughing on the trampoline (or elasticated bed, as it's translated in Spanish), and watching Dora, Diego, Mickey Mouse and Handy Manny with Martina, until that day we can go back to Spain and re-establish a normal life for ourselves again. It seems a very, very long way away that we will even be able to think about going back but we have to for Leo and for ourselves too. Plus we've made firm friends in Martina's lovely parents, with whom we've enjoyed much laughter and fun, as well as much talking about all sorts of topics from rhabdomyosarcomas to living abroad to Michael Moore!
Muchos gracias Martina, Mercedes y Paco. You coming to visit us in the UK has lifted us all, not just Leo, and has given us much hope for the future to come.
Tomorrow's another day so let's see what it has in store for us all....
Monday, August 11, 2008
1 Down...29 To Go
One session of radiotherapy down...twenty-nine to go...or 3% completed as PJ has said tonight. Today could not have been more difficult in sooo many ways, except we could have got a puncture on the way to the hospital, or got lost, or overslept (not that this would have happened given neither PJ nor I slept last night).
We arrived at the hospital with time to spare which was handy as the doctors needed to cross-match Leo for blood. Then there was a delay as his Hb levels indicated he was anaemic and possibly too much so for radiotherapy today...but they've gone ahead with the first treatment and then given him blood afterwards. Then once we left the hospital for home, Leo was very sick and we ended up back at the hospital for three lots of anti-sickness drugs. Poor Leo..it's only the first day of radiotherapy and everything that could have happened, has. Most children tolerate radiotherapy well but given he was so sick today, it looks likely that Leo will need lots of anti-sickness drugs over the weeks to help him tolerate the treatment.
The major heartache came upon Leo waking up from the general anaesthetic and it just does not agree with him. Two hours later, he was still kicking, screaming, growling and generally quite peeved to say the least. Not impressed at all, but this was not just his behaviour or personality. Some kids, not many, but some just don't get on well with the anaesthetic and so we're having to look ahead to another 29 days over the next six weeks of this type of thing. The anaesthetists are going to give Leo another drug on top of the normal one tomorrow which should hopefully sedate him for longer which should give his body time to secrete the anaesthetic before he wakes up..that's the theory anyway.
For all those who've asked if there's anything we need or anything you can do, all we ask right now is perhaps to give blood. Already Leo has had three blood transfusions which enable him to continue with the treatment and be 'well' enough for treatment. We've all seen the adverts about how blood can save lives and now we're seeing first hand that Leo and other children like him rely upon other people's blood to keep them going.
So if you're interested, this link will take you to a page where you can check for local sessions for blood donation;
http://www.blood.co.uk/SessionSearcher/search.aspx
Giving blood takes about an hour in total once you've done the forms, given blood and then had your cup of tea and a biscuit or two. So easy really when you consider your blood can and will help children just like Leo (am I sounding too much like an advert??)
Tomorrow is another day and let's hope it brings different challenges.
We arrived at the hospital with time to spare which was handy as the doctors needed to cross-match Leo for blood. Then there was a delay as his Hb levels indicated he was anaemic and possibly too much so for radiotherapy today...but they've gone ahead with the first treatment and then given him blood afterwards. Then once we left the hospital for home, Leo was very sick and we ended up back at the hospital for three lots of anti-sickness drugs. Poor Leo..it's only the first day of radiotherapy and everything that could have happened, has. Most children tolerate radiotherapy well but given he was so sick today, it looks likely that Leo will need lots of anti-sickness drugs over the weeks to help him tolerate the treatment.
The major heartache came upon Leo waking up from the general anaesthetic and it just does not agree with him. Two hours later, he was still kicking, screaming, growling and generally quite peeved to say the least. Not impressed at all, but this was not just his behaviour or personality. Some kids, not many, but some just don't get on well with the anaesthetic and so we're having to look ahead to another 29 days over the next six weeks of this type of thing. The anaesthetists are going to give Leo another drug on top of the normal one tomorrow which should hopefully sedate him for longer which should give his body time to secrete the anaesthetic before he wakes up..that's the theory anyway.
For all those who've asked if there's anything we need or anything you can do, all we ask right now is perhaps to give blood. Already Leo has had three blood transfusions which enable him to continue with the treatment and be 'well' enough for treatment. We've all seen the adverts about how blood can save lives and now we're seeing first hand that Leo and other children like him rely upon other people's blood to keep them going.
So if you're interested, this link will take you to a page where you can check for local sessions for blood donation;
http://www.blood.co.uk/SessionSearcher/search.aspx
Giving blood takes about an hour in total once you've done the forms, given blood and then had your cup of tea and a biscuit or two. So easy really when you consider your blood can and will help children just like Leo (am I sounding too much like an advert??)
Tomorrow is another day and let's hope it brings different challenges.
Pre-Day 1 of Radiotherapy
So it's just into Monday morning on August 11th, 2008 and Leo starts the next vital part of kicking the cancer today. We're off to start his treatment at the Royal Marsden and it feels like it's come around very quickly. Weird that our world was rocked upside down with this whole adventure just over 3 months ago, and now we're already at week 14 of his treatment. Probably doesn't feel quick to Leo but then children don't tend to have the same concept of time as adults.
Rules of engagement this week include no food including milk after 6am every day, and no water after 10am and as Leo is going to bed late every evening, we're not foreseeing this being too much of a problem. He even managed some cottage pie with us late this evening so at least we know he's eaten something.
Given Leo's entire week has been mainly about consuming milk and literally hardly any food, we're pleased he's eaten for many reasons. The chemo drugs make him very constipated and this week, more so than ever. Unfortunately, if this carries on and he won't take any oral meds to combat the constipation, then the doctors will need Leo to have a naso-gastric tube up his nose and into his stomach to feed him with more nutritious things than just milk. It's dangerous for him not to 'go' properly, especially leading into this crucial time of six week's where the radiotherapy will really batter his body and immune system, as well as his brain.
PJ and I are resigned to the fact that it's highly unlikely Leo will go his whole treatment without a tube, but the longer the better. Somehow kids with a naso-gastric tube just look so much more sick; just goes to show how used to seeing Leo without hair, eyelashes and eye-brows we are if we think he'll look more sick with a tube!!
PJ and I have explained to him that tomorrow (or rather, later this morning as it's only just coming up to 1am on Monday morning), he will be at the new hospital again and this time for medicine in his 'wiggly worms' (Hickmann line) followed by a little sleep and then when he wakes up, we can have sandwiches and milk and whatever else he'd like to eat and drink. Then off to rest and sleep and play, and then back for the same on Tuesday. He's quite looking forward to Tuesday...actually, let me re-phrase that; Leo's is very much excited about Tuesday as Martina, Leo's friend from school in Spain is coming to see him and visit with us. Excited is an understatement!
Right off to bed myself and actually quite calm about tomorrow. PJ and I are making a conscious effort to remain calm and relaxed as Leo feeds off of our feelings and can tell if we're scared and anxious.
Tomorrow is another day...
Rules of engagement this week include no food including milk after 6am every day, and no water after 10am and as Leo is going to bed late every evening, we're not foreseeing this being too much of a problem. He even managed some cottage pie with us late this evening so at least we know he's eaten something.
Given Leo's entire week has been mainly about consuming milk and literally hardly any food, we're pleased he's eaten for many reasons. The chemo drugs make him very constipated and this week, more so than ever. Unfortunately, if this carries on and he won't take any oral meds to combat the constipation, then the doctors will need Leo to have a naso-gastric tube up his nose and into his stomach to feed him with more nutritious things than just milk. It's dangerous for him not to 'go' properly, especially leading into this crucial time of six week's where the radiotherapy will really batter his body and immune system, as well as his brain.
PJ and I are resigned to the fact that it's highly unlikely Leo will go his whole treatment without a tube, but the longer the better. Somehow kids with a naso-gastric tube just look so much more sick; just goes to show how used to seeing Leo without hair, eyelashes and eye-brows we are if we think he'll look more sick with a tube!!
PJ and I have explained to him that tomorrow (or rather, later this morning as it's only just coming up to 1am on Monday morning), he will be at the new hospital again and this time for medicine in his 'wiggly worms' (Hickmann line) followed by a little sleep and then when he wakes up, we can have sandwiches and milk and whatever else he'd like to eat and drink. Then off to rest and sleep and play, and then back for the same on Tuesday. He's quite looking forward to Tuesday...actually, let me re-phrase that; Leo's is very much excited about Tuesday as Martina, Leo's friend from school in Spain is coming to see him and visit with us. Excited is an understatement!
Right off to bed myself and actually quite calm about tomorrow. PJ and I are making a conscious effort to remain calm and relaxed as Leo feeds off of our feelings and can tell if we're scared and anxious.
Tomorrow is another day...
Friday, August 08, 2008
Fun and Stress
Family, kites, fresh air, bloods, chemo, sick, stress, hot air balloons, shopping, packing, little bit of sleep, smiles, laughs, looking forward, future, scared, support, hospital, Oncology Day Beds, research, planning, doctors, email support, Spanish friends and just downright cute (from Leo)....this is our week in a snapshot!
Tuesday, August 05, 2008
I'm So Lucky, Mummy
It's amazing what three years old think about; Leo was given some pocket money by PJ yesterday and he kept it safely in his t-shirt pocket all afternoon. At one point, he said to me, 'mummy, I'm so lucky'. I asked why and he replied that he was 'a lucky boy because my daddy gave me pocket money and it's still in my pocket'. He was so cute. He really thought he was lucky and yet he has all this stuff going on with doctors and nurses doing things. We're the lucky ones more like; to have Leo as our son, I mean. We're the lucky ones.
We saw our friend's eight day old baby today called George and he was a little sweetie. Seeing George reminded us both that Leo was that small once (just over 9 lbs) but looking at him now with things as they are, children grow up way too quickly. Whilst at our friend's, Leo found a doctor's kit and he pretended to do examinations on me including blood pressure. It's good he knows these things but we wish he never had to know how to take a blood pressure! Can't keep wishing though as you often don't get what you want.
Having a very busy week ahead of leaving for Surrey on Sunday.
We saw our friend's eight day old baby today called George and he was a little sweetie. Seeing George reminded us both that Leo was that small once (just over 9 lbs) but looking at him now with things as they are, children grow up way too quickly. Whilst at our friend's, Leo found a doctor's kit and he pretended to do examinations on me including blood pressure. It's good he knows these things but we wish he never had to know how to take a blood pressure! Can't keep wishing though as you often don't get what you want.
Having a very busy week ahead of leaving for Surrey on Sunday.
Saturday, August 02, 2008
Little Leo
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.
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.
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.
Friday, July 25, 2008
Moving Days
We're off to the new house today but not toally leaving Clic Housebehind. Due to hospital appointments and Bristol's traffic, it's not been easy to pick up all the things we've bought and been given via Freecycle.org in one day. So we've been building up to it.
Leo is very excited about having his own bedroom, but more so he can play on his own, I think. He keeps asking if I can sleep with him! We'll wait and see, shall we? The key thing is we'll be able to make meals without thinking about other people sitting down to eat just as our dinner is cooked! And we also will not have to compare stories about childhood cancer with others! After nearly three months at Clic House, it's so important for all of us that we have some normality ahead of a busy week next week and an even busier six weeks from Aug 11th.
A new Hickmann line is being put in on Tuesday then we're off to Surrey for the clinic appointment on Wednesday, going to my parent's in Henley for Wednesday and Thursday night so we can be back in Surrey again for planning and the shell to be made under a general anaesthetic on Friday. There's no point us driving all the way back to Bristol in between these appointments otherwise it will only add to our tiredness, I think.
Hopefully then, we'll be back on Friday in time for Leo to start his next cycle of chemo. This is the be confirmed, but may need to be put back 24 hours in order for the shell and planning to be completed in time for the radiotherapy to start.
Leo is very excited about having his own bedroom, but more so he can play on his own, I think. He keeps asking if I can sleep with him! We'll wait and see, shall we? The key thing is we'll be able to make meals without thinking about other people sitting down to eat just as our dinner is cooked! And we also will not have to compare stories about childhood cancer with others! After nearly three months at Clic House, it's so important for all of us that we have some normality ahead of a busy week next week and an even busier six weeks from Aug 11th.
A new Hickmann line is being put in on Tuesday then we're off to Surrey for the clinic appointment on Wednesday, going to my parent's in Henley for Wednesday and Thursday night so we can be back in Surrey again for planning and the shell to be made under a general anaesthetic on Friday. There's no point us driving all the way back to Bristol in between these appointments otherwise it will only add to our tiredness, I think.
Hopefully then, we'll be back on Friday in time for Leo to start his next cycle of chemo. This is the be confirmed, but may need to be put back 24 hours in order for the shell and planning to be completed in time for the radiotherapy to start.
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