X-ray on Monday afternoon to check Leo's chest - just your routine, bi-monthly pictures to make sure no cancer has developed there.
MRI under yet another general anaesthetic is on May 18th to check the left-over chunk of (assumed dead) tumour.
We've definitely noticed Leo squinting more now the sun is out a little more here in the UK. So obviously, we wonder whether it is actually due to the weather or if he's having a few more problems due to the radiotherapy or initial tumour. I guess we'll find out when we follow up with Leo's oncologist post-MRI scan and in his next eye appointment. Unfortunately without putting any suggestion into a question, it's quite difficult to get a 4 year old to really tell you what the problem is with an eye which he knows has caused problems this past year.
We're also well on the way towards improving Leo's diet and the amount he is eating each day. Until Monday, which was exactly a year since diagnosis, Leo had not put on any weight in a year - well he had lost loads and then steadily got back to the same weight. He weighed 16.5 kg on Monday, May 4th, 2009 which is exactly what he weighed the day we went to the Children's Hospital for the initial MRI which would change our world forever on My 4th, 2008.
However, we introduced a rather quirky bedtime routine last Monday which includes an MP3 track of soothing words about eating well means lots of energy and playing outside, and doing lots of fun things...and since then he's not only put on nearly 1 pound in weight (in 5 days), he has also tended to eat a much wider variety of food without the stress and arguments each time we tried to encourage (and make) him to have food.
We have a treat for Leo lined up tomorrow. All 3 of us are off to ride on the real Thomas the Tank Engine and he doesn't know! Cannot wait to see the surprised look on his face at 11am tomorrow!
Thanks to you all for sending the cards and emails of support at this rather weird time - one year on since diagnosis and I think it's safe to say, we're so very grateful for all your support over the course of the past year. Will report on the x-ray and scan as soon as we know something and hopefully, fingers and just about everything else crossed, that we'll say no change. Nerves will be shredding between now and that follow-up with Leo's doc..yet again!!!!! Am sure it will get better.
Thanks again.
H, PJ and Leo xxx
Friday, May 08, 2009
Sunday, May 03, 2009
365 Days
A year ago tomorrow our lives changed so significantly that sometimes it's hard for us to really remember life before the big C! However, despite many negatives which are well documented both here and in the minds of all those who know Leo, there've been many positives too.
I'll say that again because it can sound a bit weird...despite Leo having cancer, we've actually found things to be positive about. And yes, most days are really hard. Hard just to get our heads around life as it is now and any future that's mapped out for us all, but generally, on the good days we appreciate life so much more. After all, we do know families whose children are not going to make it and whilst that's still out there for our family, we're currently not there and so we need to be thankful for another non-treatment / non-cancer day, and every day until / or if our worst nightmares do come true.
And this is why the past few weeks with Leo have been simply amazing. He's not been at nursery as his energy levels are still so low, and therefore Leo and I have been doing things each day which make me so happy and proud to be his mum. Despite wondering whether the chicken pox are not out of his system yet (more spots this week - bizarre or what???), not eating and still tired, him not being at nursery school has meant we have spent some serious one-to-one quality time together. His behaviour has been impeccable which is a significant improvement and those anxiety concerns we had before he had chicken pox have dissipated - so perhaps all he needed was to not feel like we were dumping him at school and more time one-to-one with his parents.
Another scan in a few weeks plus yet another chest x-ray, although if Leo does what he did on Friday again, then we may be back at the hospital before these scheduled visits. He took himself upstairs to bed citing a sore tummy and that his legs hurt? Strange but then I guess there must come a point where if you're not eating properly and constantly tired that you're bound to feel like heading to bed and an adult would have done so before now!
So much has happened in the last 365 days and whilst, yes, of course, we wish life was different and cancer had not made us appreciate things we previously took for granted, it has and for that we're grateful.
I'll say that again because it can sound a bit weird...despite Leo having cancer, we've actually found things to be positive about. And yes, most days are really hard. Hard just to get our heads around life as it is now and any future that's mapped out for us all, but generally, on the good days we appreciate life so much more. After all, we do know families whose children are not going to make it and whilst that's still out there for our family, we're currently not there and so we need to be thankful for another non-treatment / non-cancer day, and every day until / or if our worst nightmares do come true.
And this is why the past few weeks with Leo have been simply amazing. He's not been at nursery as his energy levels are still so low, and therefore Leo and I have been doing things each day which make me so happy and proud to be his mum. Despite wondering whether the chicken pox are not out of his system yet (more spots this week - bizarre or what???), not eating and still tired, him not being at nursery school has meant we have spent some serious one-to-one quality time together. His behaviour has been impeccable which is a significant improvement and those anxiety concerns we had before he had chicken pox have dissipated - so perhaps all he needed was to not feel like we were dumping him at school and more time one-to-one with his parents.
Another scan in a few weeks plus yet another chest x-ray, although if Leo does what he did on Friday again, then we may be back at the hospital before these scheduled visits. He took himself upstairs to bed citing a sore tummy and that his legs hurt? Strange but then I guess there must come a point where if you're not eating properly and constantly tired that you're bound to feel like heading to bed and an adult would have done so before now!
So much has happened in the last 365 days and whilst, yes, of course, we wish life was different and cancer had not made us appreciate things we previously took for granted, it has and for that we're grateful.
Thursday, April 23, 2009
Slow Progress
Leo is doing well but getting better slowly - having said that, the doctor did say that if either PJ or I had chicken pox with the immune system Leo has at present, we'd be off work for a further 3 to 4 weeks! So we cannot expect too much of him. I've decided to therefore cut work right back and be a full-time mum, and only working once Leo is in bed. As a direct result, he's been really happy with very few of the temper tantrums and anxiety concerns he was showing before. Big lesson to have to learn and own up to the fact that I am not a good part-time Mum / part-time career woman. I've paid the price and more importantly, Leo has paid the price for having a Mum trying to be all things to all people; he has clearly suffered but at least we're on the right track now.
Despite Leo wanting to go to the hospital a few times this week (which also happened when he's been in hospital a while back in February after his birthday), he's had fun at the park, Avon Valley Country Park and with some new friends too. We've also made the most of the lovely weather and played football and golf out in the garden this week too, with PJ having to forget how tired he is when he finally is home from work, as Leo soon perks up despite being super-tired - Leo does a very good job in the puppy-dog eyes and before you can blink, Leo and PJ head off to play football for 30 minutes or so.
Back to the hospital again over the next month or so with another chest x-ray (how many can children have in a lifetime?), and his third post-treatment MRI in mid-May. May be interesting to have his eye checked too as a few times, PJ and I have noticed his eye-lid sagging a little more, but we're putting this down to his sheer tiredness.
Hard to believe that it was exactly a year ago I returned to the UK for my surgery and on the spur of the moment, booked flights for PJ and Leo. Thank goodness I did otherwise they'd have been in Spain when this all happened and I would have been stuck here recovering from a major and life-changing operation. Funny how things happen...
What could possibly happen in the next year? Actually, as soon as I thought and wrote that down...I wished I hadn't...your brain goes a-wondering where you'd rather it didn't when you think about the future...
About the most we can look to is tomorrow and the next month or so...and tomorrow's a new day!
Despite Leo wanting to go to the hospital a few times this week (which also happened when he's been in hospital a while back in February after his birthday), he's had fun at the park, Avon Valley Country Park and with some new friends too. We've also made the most of the lovely weather and played football and golf out in the garden this week too, with PJ having to forget how tired he is when he finally is home from work, as Leo soon perks up despite being super-tired - Leo does a very good job in the puppy-dog eyes and before you can blink, Leo and PJ head off to play football for 30 minutes or so.
Back to the hospital again over the next month or so with another chest x-ray (how many can children have in a lifetime?), and his third post-treatment MRI in mid-May. May be interesting to have his eye checked too as a few times, PJ and I have noticed his eye-lid sagging a little more, but we're putting this down to his sheer tiredness.
Hard to believe that it was exactly a year ago I returned to the UK for my surgery and on the spur of the moment, booked flights for PJ and Leo. Thank goodness I did otherwise they'd have been in Spain when this all happened and I would have been stuck here recovering from a major and life-changing operation. Funny how things happen...
What could possibly happen in the next year? Actually, as soon as I thought and wrote that down...I wished I hadn't...your brain goes a-wondering where you'd rather it didn't when you think about the future...
About the most we can look to is tomorrow and the next month or so...and tomorrow's a new day!
Thursday, April 16, 2009
Home Tomorrow
So the pops are going and Leo should be home tomorrow - yippee! He's practically turned his room into an art gallery so tomorrow we need to make sure we pack up properly and not leave any art behind! He'd know, for sure as he remembers everything. I've added some pictures which show what Leo's been up to with some rather more interesting things to do with a hospital bowl...
Once home, he'll have another 10 days of oral anti-viral meds to take which is in addition to the last 7 days of IV anti-virals. We're also likely to keep him relaxed and not doing too much so as he can get better without any hiccups. Not sure if he'll be back at school Monday but we'll wait and see. As and when he does go back, he's been off for nearly three weeks so we'll need to be careful to phase him in properly otherwise we may end up in the same place as before, where he wasn't eating and having anxiety problems.
Monday, April 13, 2009
Another Few Days
Leo's doing a bit better - well enough to do lots of artwork and sticking and learning, in between sleeping! His temperature is more regulated now and only spikes back up to the 39s once a day so that's better for him, and makes him more comfortable.
He still has new pox coming out each day so the virus is active. Today's new pox were on the soles of his feet and in between his fingers, plus one of the earliest pox has become infected so we just need to keep an eye on it.
Fingers crossed he'll be home Wednesday evening sometime..we hope..as long as the pox stop cropping!
He still has new pox coming out each day so the virus is active. Today's new pox were on the soles of his feet and in between his fingers, plus one of the earliest pox has become infected so we just need to keep an eye on it.
Fingers crossed he'll be home Wednesday evening sometime..we hope..as long as the pox stop cropping!
Friday, April 10, 2009
Not so Top of the Pops
Leo calls them 'chicken pops' and has kept denying he has them, but his chicken pox are more problematic than we'd first thought. Indeed, we should have taken him into hospital as soon as we knew on Tuesday that he had chicken pox, and hence had to leave our holiday in Scotland. Leo should have started anti-viral drugs then, but me being me, I thought we had to assume 'normality' now he's getting further from his treatment.
As it is, Leo's been really poorly, as many kids get with chicken pox; he's also had a temperature of 40 and today was only taking sips of water if that. So I finally gave in and called the ward at the hospital and told them his temp was high, that he'd had chicken pox since Tuesday etc etc. They told us to go in for blood tests to check his immune system and it seems that the protocol is that within the first six months post-treatment, the part of his immune system which deals with viral infections such as chicken pox, is not yet strong enough to deal with it. Complications with children with low immune systems include infections of the brain and heart as well as meningitis.
What we didn't know was that he really needed at least 5 days of anti-viral drugs via an IV starting ASAP and so despite Leo's major protestations, the doctors managed to take blood and get a cannula into his hand. They gave him some painkillers and the anti-virals, and as soon as the painkillers kicked in, Leo finally managed to sleep and his temperature came down to 37.9.
So what we know now is that he'll be in for at least 5 days and he could be in for up to 10 days for IV drugs, depending on whether his body starts to fight the chicken pox itself and with the assistance of the drugs.
Hopefully the drugs will help the pox on his tongue and in his mouth go down, which means he'll be able to drink more and maybe even eat at some point. I just hope he just feels better soon.
Fingers crossed...
As it is, Leo's been really poorly, as many kids get with chicken pox; he's also had a temperature of 40 and today was only taking sips of water if that. So I finally gave in and called the ward at the hospital and told them his temp was high, that he'd had chicken pox since Tuesday etc etc. They told us to go in for blood tests to check his immune system and it seems that the protocol is that within the first six months post-treatment, the part of his immune system which deals with viral infections such as chicken pox, is not yet strong enough to deal with it. Complications with children with low immune systems include infections of the brain and heart as well as meningitis.
What we didn't know was that he really needed at least 5 days of anti-viral drugs via an IV starting ASAP and so despite Leo's major protestations, the doctors managed to take blood and get a cannula into his hand. They gave him some painkillers and the anti-virals, and as soon as the painkillers kicked in, Leo finally managed to sleep and his temperature came down to 37.9.
So what we know now is that he'll be in for at least 5 days and he could be in for up to 10 days for IV drugs, depending on whether his body starts to fight the chicken pox itself and with the assistance of the drugs.
Hopefully the drugs will help the pox on his tongue and in his mouth go down, which means he'll be able to drink more and maybe even eat at some point. I just hope he just feels better soon.
Fingers crossed...
Saturday, April 04, 2009
A Welcome Break
After about 8 hours including breaks for food, bathroom and refueling, we're back at the magnificrnt Malcolm Sargent House for a week-long break. Whilst Leo's been so excited this week about our holiday, he's also been the most tired he's been in a long time. We decided to keep him at home and let him rest instead of taking him to nursery school. He'd have a 3 to 4 hour sleep every afternoon and then sleep for 10 hours overnight too plus his appetite has not been all that great. So a holiday is a welcome break for all three of us.
Hopefully we'll all be able to get some good sleep, sea air (as the house is on the beach) and just generally relax, ready for whatever may be thrown in our direction.
We've also decided to reduce Leo's hours at nursery school as he's obviously finding things quite tough right now, and whilst he loves nursery, if he's too tired to eat, then that's not a good thing. So for a month or more, he'll only be in school for a few hours three times a week - and then we'll reassess.
Hopefully we'll all be able to get some good sleep, sea air (as the house is on the beach) and just generally relax, ready for whatever may be thrown in our direction.
We've also decided to reduce Leo's hours at nursery school as he's obviously finding things quite tough right now, and whilst he loves nursery, if he's too tired to eat, then that's not a good thing. So for a month or more, he'll only be in school for a few hours three times a week - and then we'll reassess.
Tuesday, March 31, 2009
A Walk in the Park
Despite Leo being super-tired with 3 hour full-on sleeps every afternoon for the last few days, we still managed to enjoy a lovely day out in the sunshine with good friends yesterday...and here are the photos to prove it!
Nice weather in England, I hear you cry? Well, yes! Chilly but with fabulous blue skies. Weather, great company, awesome son and husband and a lovely countryside which makes you feel elated to be alive.
Wednesday, March 25, 2009
And Yet More Hospital Visits and Unwanted Temperatures...
Not a week goes by it seems without more unscheduled hospital visits and so last week Leo had another chest x-ray due to his on-going cough - x-ray was clear but to go back if he continues to lose weight and his chest / cough does not clear up.
Then Monday upon picking Leo up from school, his right eye was bright red and bloodshot, and it wasn't like that in the morning. So yet another conversation with the oncology day-beds unit who said they'd see Leo down in the kid's A&E department.
We all knew it was a simple viral conjunctivitis again but because it's his right eye, we need to make sure the infection does not take hold. He is more susceptible to these eye infections as we were reminded a few weeks ago but it does feel like it's one thing after another Leo. Having said that, he does take it all in his stride!
Today his temperature has started to creep up again but then his eye seems better with the ointment so not sure what the next few days have in store for him.
Then Monday upon picking Leo up from school, his right eye was bright red and bloodshot, and it wasn't like that in the morning. So yet another conversation with the oncology day-beds unit who said they'd see Leo down in the kid's A&E department.
We all knew it was a simple viral conjunctivitis again but because it's his right eye, we need to make sure the infection does not take hold. He is more susceptible to these eye infections as we were reminded a few weeks ago but it does feel like it's one thing after another Leo. Having said that, he does take it all in his stride!
Today his temperature has started to creep up again but then his eye seems better with the ointment so not sure what the next few days have in store for him.
Thursday, March 19, 2009
Updates and Baldy (including pictures)
Lots has been happening this past week.
Leo's enjoyed his Gramps's birthday and spent some lovely time with Nan and Gramps last Sunday. It's PJ's turn to celebrate a birthday this Sunday and Leo's been busy drawing and making birthday cards for him.
We've also been to the hospital again today for an unscheduled check-up. Leo's chesty cough seems to be not getting any better plus he seems to be losing weight so his consultant asked us to take Leo in for another chest x-ray, just to be on the safe side. Nothing untoward was found on the films and so it's life as usual. I guess the good thing is this wonderful sunny weather means we can encourage Leo to spend lots of time outside, which hopefully should help get rid of his chesty cough.
And then there's been some more fundraising and this time in aid of finding a cure for childhood cancers. Patrick O'Hagan is a Chicago cop who is a member of our extended family, helped PJ and I massively when we lived in Chicago all those years ago and has also been very supportive with lots of messages of good luck and best wishes since this whole adventure started for Leo.
Now whilst a cure will never be found for Leo - quite simply, there's just no money in finding a cure for Leo or other children like him as so few children get this type of cancer so the concentration for a cure is for those with leukemia and more widespread cancer.
Patrick, being the kind-hearted man he is, has joined an amazing charity St. Baldrick's. They fundraise with the main wish to help fund a search for a cure and help many, many children and Patrick had already helped them with some fundraising this time last year, so before Leo was diagnosed.
So this year Patrick's fundraising has taken on a bit more impetus now he knows of Leo's situation and he's raised over $2000 and you want to know how? The clue is in the name...St. BALDrick's!!!
Before and after pictures are above - enjoy! Well done, Patrick. Hope it grows back in time for you to do it all over again next year...it's all for a good cause!
Leo's enjoyed his Gramps's birthday and spent some lovely time with Nan and Gramps last Sunday. It's PJ's turn to celebrate a birthday this Sunday and Leo's been busy drawing and making birthday cards for him.
We've also been to the hospital again today for an unscheduled check-up. Leo's chesty cough seems to be not getting any better plus he seems to be losing weight so his consultant asked us to take Leo in for another chest x-ray, just to be on the safe side. Nothing untoward was found on the films and so it's life as usual. I guess the good thing is this wonderful sunny weather means we can encourage Leo to spend lots of time outside, which hopefully should help get rid of his chesty cough.
And then there's been some more fundraising and this time in aid of finding a cure for childhood cancers. Patrick O'Hagan is a Chicago cop who is a member of our extended family, helped PJ and I massively when we lived in Chicago all those years ago and has also been very supportive with lots of messages of good luck and best wishes since this whole adventure started for Leo.
Now whilst a cure will never be found for Leo - quite simply, there's just no money in finding a cure for Leo or other children like him as so few children get this type of cancer so the concentration for a cure is for those with leukemia and more widespread cancer.
Patrick, being the kind-hearted man he is, has joined an amazing charity St. Baldrick's. They fundraise with the main wish to help fund a search for a cure and help many, many children and Patrick had already helped them with some fundraising this time last year, so before Leo was diagnosed.
So this year Patrick's fundraising has taken on a bit more impetus now he knows of Leo's situation and he's raised over $2000 and you want to know how? The clue is in the name...St. BALDrick's!!!
Before and after pictures are above - enjoy! Well done, Patrick. Hope it grows back in time for you to do it all over again next year...it's all for a good cause!
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