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...
Subscribe to:
Posts (Atom)
