Scott has had a fever for 2 days. Taking him to the doc soon and Im panicking.
Happy Christmas.
Scott & Sunny
Thursday, December 17, 2009
Thursday, December 10, 2009
Tuesday, November 10, 2009
Monday, November 9, 2009
Sorry for being such a terrible blog-updater! Anyway, just wanted to say that the surgery went perfectly on Friday. The port was removed completely (sometimes part of it becomes attached and cant be taken out!) and the old scar tissue was also cut out and a new smaller and neater scar has taken its place. Scott had wanted to keep the port as a memento but there are strict rules that mean the port is sent to pathology for testing and then destroyed. The surgeon did however take a photo and give it to us. Its gross, with little bits of 'meat' attached to it. Its nasty. I think David is planning on scanning it to post on here for Sandie to see. LOL.
Friday, November 6, 2009
Tuesday, November 3, 2009
Just a very quick update to let you all know that Scott had clinic today and his bloodwork looked pretty good. Everything was much the same as last month with the exception of his lymphocoytes which were low - probably means he is fighting a bug of some sort, or could be allergies. He also saw the pediatric surgeon who placed his port back in January 07 at diagnosis. It was just a brief visit to discuss the surgery to remove it and for the doctor to check Scott over. Surgery is planned for Friday at 7.30am!!!!!!! UG. It seems strange that we have reached this milestone. Im not superstitious, but for some reason, it bothers me.
I remember all too well the day it was 'installed', the day following diagnosis, just sitting waiting for him to come out of surgery. He also had his first spinal chemo at the same time. It was a nightmare. I couldnt stop crying.
And now it's coming out. Wow.
For those not familiar, this is how easy it is to draw blood, give IV chemo or nutrition (such as TPN), or antibiotics using a port...
I remember all too well the day it was 'installed', the day following diagnosis, just sitting waiting for him to come out of surgery. He also had his first spinal chemo at the same time. It was a nightmare. I couldnt stop crying.
And now it's coming out. Wow.
For those not familiar, this is how easy it is to draw blood, give IV chemo or nutrition (such as TPN), or antibiotics using a port...
Monday, October 19, 2009
Weekend in truly awful photography
Saturday marked the 5th anniversary of our landing on the shores of the US. Woohoo, do you have a flag? LOL. Sandie will be the only one to get that I'm sure. David surprised us with this beautiful, diabetes inducing, Scotland cake ... 
Derry had a hockey game on Saturday and got the only penalty for a tackle which was not really illegal its just that the other kid was so small he got kind of flattened, and I guess the ref had little man syndrome (cos he was a shortarse too) and decided to bitch slap Derry with a "2minutes, feel shame" 
thing.
thing.We found a new species of frog!!! 
After sussing each other out for a while, I am now collaborating (long word for 2 plastic rock star gamers hanging out together) with the incredible, and one of the best 'plastic rock star' gamers in the world, my rb bff friend Angel! David, Derry and Scott are slowly becoming deaf and may kill me if I screech 2 Minutes to Midnight again, but hell, its been fun while it lasted!
Jake met Dave ...
No photo's - sorry - but after nearly 3 years of being unable to ride his bike, yesterday Scott dusted it off, dragged it out the garage and took off!! I would have taken a photo but a) it seemed so normal and natural and it wasnt till after he'd gone that i thought 'whoa dude, Scott just took off on his bike!!' and b) was too busy singing 2 Minutes to Midnight.
Well I was just about to post this when Scott got out of bed, grunted, farted, giggled, then picked up his guitar .. nothing like a rousing rendition of Ring of Fire to start off the day! UG!
Well I was just about to post this when Scott got out of bed, grunted, farted, giggled, then picked up his guitar .. nothing like a rousing rendition of Ring of Fire to start off the day! UG!
Wednesday, October 14, 2009
I'm still struggling to come up with a decent post about U2 without sounding like a complete sappy girl. I'm not going to give a review of the show because I cant remember any of it, even at the time I wasnt paying the blindest bit of attention to the music, was just lost in the 'OMG!!!-I'm sharing a field with Bono!!' - ishness of it all. That doesnt make sense does it?! LOL. Well it does to me.
I think that part of the reason why it was so extra-special and exciting was that it was such a huge surprise and so last minute ... oh and not having to pay for any of it - that was nice too!! We knew that U2 were coming to Tampa, but we also knew not only the price of the tickets but also how hard it was to get hold of them, and had written it off as something that simply wasnt going to be happening for us. That is until the Childrens Cancer Centre called me on Thursday afternoon!! It turns out that a very generous man connected with the stadium had some extra tickets and had given them to a couple of local charities, and then, someone at the CCC (who obviously must have some very cool psychic abilities, and had picked up on my 'I NEED to see Bono vibes) picked up the phone and called US! Poor Sharin, I think I screamed a bit. LOL.
So anyway, Friday comes and I'm a mess. Too fat and all my clothes were horrible. My hair wouldnt behave, I sneeze mid-mascara and have a meltdown, the air conditioning was working overtime and still I'm sweating buckets. By the time we leave the house (late) everyone hates me. As luck would have it though, our lateness was perfect as we missed the crazy traffic, cruised right on up to the stadium, flashed the VIP parking badge (oh yeah, so cool) and had just enought time to grab some U2 goodies and settle into our luxury suite (oh yeah, so cool ... again!).
You know, it would have been a great night even without any music. I'm sure Im was not the only person there who could have happily sat and stared at The Claw all night. It was beautiful, all flashy lights and glowy and alien-esque. Kind of like the spaceship in Close Encounters, you didnt need to see the aliens - or the band - it was cool on its own.
We shared the suite with another pediatric cancer patient and his mom, and some really nice kids from a local childrens home - they were SO well behaved and were obviously very, very happy to be there. It was a great atmosphere, just staring in awe at The Claw and watching the stadium fill up until every seat in the house was taken. All 75,000 of them. Wow.
A band named Muse from England - oh it was so nice to hear a familar voice - opened for U2 and they were incredible. My god, that dude could sing! What a voice.
I think I love him.
Then, came U2. :) OMG! Bono sang Breathe and it was all like still and quiet, yet electric and loud and supercharged awesomeness too. If you see what I mean. He was singing, the Claw was pulsating, The Edge was doing something magical with his guitar and all was right in the Universe. LOL. Am I overdoing it?! :) Truly, it was THAT good. And sorry, I know I havent even mentioned David, Derry and Scott yet, they were there I promise, but I think I was just wrapped up in my own little world so much that night. Is that so wrong. I dont think so. I do know that they were loving it just as much as me, well maybe not Derry because he's so cool and doesnt get excited, but anyway, they were there and they were having LOTS of fun too.
So, the band played on ... what they played I cant remember, its all a bit of a blur. Everyone in the stadium was rocking out. It was cool. Mr Scaglione, our kind benefactor, and some of his friends and colleagues came to see if we were okay and if there was anything more they could do for us .. Im telling you, these people were so generous and so interested in the children and genuinely concerned about what they had all been through, or were going through and really wanted to make sure they had the time of their lives. In fact, Mr Scaglione pretty much hung out with us for the rest of the night and really bonded with Scott. It was very touching.
Then, somehow, a backstage pass appeared for Scott to allow him to get through the bowels of the stadium and into the pit via the backdoor, so to speak. (By then the children from the home had left as they had a curfew and the other child wasnt well enough to go down to the Pit.) I thought he was going with Mr Scaglione and his friends but before you know it, they're dragging me (kicking and screaming I tll you) along with them too. So we scurry through the building, passing security, bodyguards, bono's cars (!!) and all sorts of backstage rock-star coolness and pop out right below the stage. We get there mid-way though Sunday Bloody Sunday and really, what more can I say. Cool man. It was cool.
Thank you Mr Scaglione and Childrens Cancer Centre. We had so much fun.
I think that part of the reason why it was so extra-special and exciting was that it was such a huge surprise and so last minute ... oh and not having to pay for any of it - that was nice too!! We knew that U2 were coming to Tampa, but we also knew not only the price of the tickets but also how hard it was to get hold of them, and had written it off as something that simply wasnt going to be happening for us. That is until the Childrens Cancer Centre called me on Thursday afternoon!! It turns out that a very generous man connected with the stadium had some extra tickets and had given them to a couple of local charities, and then, someone at the CCC (who obviously must have some very cool psychic abilities, and had picked up on my 'I NEED to see Bono vibes) picked up the phone and called US! Poor Sharin, I think I screamed a bit. LOL.
So anyway, Friday comes and I'm a mess. Too fat and all my clothes were horrible. My hair wouldnt behave, I sneeze mid-mascara and have a meltdown, the air conditioning was working overtime and still I'm sweating buckets. By the time we leave the house (late) everyone hates me. As luck would have it though, our lateness was perfect as we missed the crazy traffic, cruised right on up to the stadium, flashed the VIP parking badge (oh yeah, so cool) and had just enought time to grab some U2 goodies and settle into our luxury suite (oh yeah, so cool ... again!).
You know, it would have been a great night even without any music. I'm sure Im was not the only person there who could have happily sat and stared at The Claw all night. It was beautiful, all flashy lights and glowy and alien-esque. Kind of like the spaceship in Close Encounters, you didnt need to see the aliens - or the band - it was cool on its own.
We shared the suite with another pediatric cancer patient and his mom, and some really nice kids from a local childrens home - they were SO well behaved and were obviously very, very happy to be there. It was a great atmosphere, just staring in awe at The Claw and watching the stadium fill up until every seat in the house was taken. All 75,000 of them. Wow.
A band named Muse from England - oh it was so nice to hear a familar voice - opened for U2 and they were incredible. My god, that dude could sing! What a voice.
I think I love him.
Then, came U2. :) OMG! Bono sang Breathe and it was all like still and quiet, yet electric and loud and supercharged awesomeness too. If you see what I mean. He was singing, the Claw was pulsating, The Edge was doing something magical with his guitar and all was right in the Universe. LOL. Am I overdoing it?! :) Truly, it was THAT good. And sorry, I know I havent even mentioned David, Derry and Scott yet, they were there I promise, but I think I was just wrapped up in my own little world so much that night. Is that so wrong. I dont think so. I do know that they were loving it just as much as me, well maybe not Derry because he's so cool and doesnt get excited, but anyway, they were there and they were having LOTS of fun too.
So, the band played on ... what they played I cant remember, its all a bit of a blur. Everyone in the stadium was rocking out. It was cool. Mr Scaglione, our kind benefactor, and some of his friends and colleagues came to see if we were okay and if there was anything more they could do for us .. Im telling you, these people were so generous and so interested in the children and genuinely concerned about what they had all been through, or were going through and really wanted to make sure they had the time of their lives. In fact, Mr Scaglione pretty much hung out with us for the rest of the night and really bonded with Scott. It was very touching.
Then, somehow, a backstage pass appeared for Scott to allow him to get through the bowels of the stadium and into the pit via the backdoor, so to speak. (By then the children from the home had left as they had a curfew and the other child wasnt well enough to go down to the Pit.) I thought he was going with Mr Scaglione and his friends but before you know it, they're dragging me (kicking and screaming I tll you) along with them too. So we scurry through the building, passing security, bodyguards, bono's cars (!!) and all sorts of backstage rock-star coolness and pop out right below the stage. We get there mid-way though Sunday Bloody Sunday and really, what more can I say. Cool man. It was cool.
Thank you Mr Scaglione and Childrens Cancer Centre. We had so much fun.
Scott and Mr Scaglioni (aka Mr Awesome!)
The Claw!!!
The Claw with fancy extending disco ball/flashing light thing
BONO!!! taken from pit, underneath claw/disco ball thingy
The Edge
Adam Clayton
Oh wondrous Claw!
Monday, October 12, 2009
Saturday, October 10, 2009
I have no idea where to start. I'm gobsmacked. Its been an incredible night thats for sure but I dont think I can really put it all into words just yet. For now I'll just post a picture of Scott and our new friends and some of the most beautiful people we have ever met ... and look close, do you see whats hanging around Scott's neck ...
And looky who we ran into as we were leaving ... Sully!!!! And wow, he couldnt have been more awesome. It was the icing on the cake. Thanks Sully, you made Derry's night!
Friday, October 9, 2009
I have tried my best not to gloat
and held out about 17 hours, but cant contain it any longer.
Cause tonight ... we (thats me and Bono!!!! hahahahah oh yea)can be as one.
Tonight ...
More details to come on how we landed unbelievable tickets for this show.
edited to add: Sian Evans, daughter of The Edge, was diagnosed with leukemia at the age of 7 in 2006.
Cause tonight ... we (thats me and Bono!!!! hahahahah oh yea)can be as one.
Tonight ...
More details to come on how we landed unbelievable tickets for this show.
edited to add: Sian Evans, daughter of The Edge, was diagnosed with leukemia at the age of 7 in 2006.
Thursday, October 8, 2009
mmmmm lovely propofol
Scott had clinic today and perhaps, hopefully, his last lumbar puncture. We were beyond nervous at what todays bloodwork would reveal due to the vast number of bruises that have been springing up on Scott lately. Not just the number of bruises but the time in which they were taking to fade. I didnt write about it, and havent updated on Scott in a while, simply because I "didnt want to go there". You know me, head in the clouds or buried in the sand, reality is often best avoided.
Anyway, his bloodwork looked great!!!! Suprisingly his platelets were very much within normal range, so I guess the bruises really did come from getting slapped about a bit by his older brother - lol - but why they have lingered on and on I dont know. His haemoglobin was 14.4 (normal), wbc 4.9 (low end of normal) and anc 3319!!! Wow for the first time in almost three years SCOTT HAS A NORMAL IMMUNE SYSTEM! (His normal anc's in the past have been artifially elevated due to the prednisone.) He also had decent monocytes which always make me happy. His doctor has given us the okay to wean Scott off Paxil which should mean a drop in weight very soon (YAY!) and his pentadamine breathing treatment is also seen as not necessary anymore.
After clinic we headed over to the day hospital for his lumbar puncture which oddly enough was done by the doctor who originally did the bone marrow aspiration which led to his diagnosis. The procedure went well and so we now wait and hope that no cancer cells are seen in the spinal fluid. If this is clear we can make an appointment with the surgeon, who placed his port almost three years ago, to have it removed.
I still don't really understand why ports are removed six months after treatment as this is not a magic number by any stretch of the imagination. What it does mean is that if the child has been off treatment for 6 months and doesn't relapse they are in GOOD remission but there can still be residual disease which can show up again many years following the end of therapy (ie relapse). Children that relapse in the bone marrow after being O/T for 6 months can try chemo again rather than face the absolute horror of a bone marrow transplant. Most relapses occur during treatment or within the first year but children are not considered cured until they have been in remission for ten years.
I'll leave you with a couple of photos of Scott prior to the lumbar puncture and another of him sleeping off his "lovely propofol" - damn its scary how much Scott likes that stuff! The doctor with him is Dr Wynn, a truly brilliant doctor and our hero.
Anyway, his bloodwork looked great!!!! Suprisingly his platelets were very much within normal range, so I guess the bruises really did come from getting slapped about a bit by his older brother - lol - but why they have lingered on and on I dont know. His haemoglobin was 14.4 (normal), wbc 4.9 (low end of normal) and anc 3319!!! Wow for the first time in almost three years SCOTT HAS A NORMAL IMMUNE SYSTEM! (His normal anc's in the past have been artifially elevated due to the prednisone.) He also had decent monocytes which always make me happy. His doctor has given us the okay to wean Scott off Paxil which should mean a drop in weight very soon (YAY!) and his pentadamine breathing treatment is also seen as not necessary anymore.
After clinic we headed over to the day hospital for his lumbar puncture which oddly enough was done by the doctor who originally did the bone marrow aspiration which led to his diagnosis. The procedure went well and so we now wait and hope that no cancer cells are seen in the spinal fluid. If this is clear we can make an appointment with the surgeon, who placed his port almost three years ago, to have it removed.
I still don't really understand why ports are removed six months after treatment as this is not a magic number by any stretch of the imagination. What it does mean is that if the child has been off treatment for 6 months and doesn't relapse they are in GOOD remission but there can still be residual disease which can show up again many years following the end of therapy (ie relapse). Children that relapse in the bone marrow after being O/T for 6 months can try chemo again rather than face the absolute horror of a bone marrow transplant. Most relapses occur during treatment or within the first year but children are not considered cured until they have been in remission for ten years.
I'll leave you with a couple of photos of Scott prior to the lumbar puncture and another of him sleeping off his "lovely propofol" - damn its scary how much Scott likes that stuff! The doctor with him is Dr Wynn, a truly brilliant doctor and our hero.
Monday, October 5, 2009
Being Freddie!!!
coming to Rock Band in 2 weeks!!!!!!! David and the boys will likely leave me. The neighbours will glare at me and plant For Sale signs in their yards. Oh yeah, ice ice baby. LOL!!
Read me
Helpful autoerotic asphyxiation alternatives from The Bloggess.
Dont read whilst your littles are around or they'll come running wanting to know whats so funny and if you're ok and you'll have to lie or do what I did and say oh nothing, just reading an interesting article about INXS and your innocent child might just reply with oh yeah the lead singer wanked himself to death, why do people do that?
OMG.WTH!GRUP**'FXNBP#88@DDHpL!!!!!!!
Dont read whilst your littles are around or they'll come running wanting to know whats so funny and if you're ok and you'll have to lie or do what I did and say oh nothing, just reading an interesting article about INXS and your innocent child might just reply with oh yeah the lead singer wanked himself to death, why do people do that?
OMG.WTH!GRUP**'FXNBP#88@DDHpL!!!!!!!
Friday, October 2, 2009
Thursday, October 1, 2009
A good cat.
Scotland, on my knee in front of the fire, blissdom ...
cool Jingle ...
With his big baby Springsteen ...
Scott's companion during chemotherapy ...
He was always there ...
Wednesday, September 30, 2009
RIP Jingle
We've not updated for a couple of weeks, but today brought some sad news. We had to put Jingle to sleep today. He had fought a corneal ulcer in one eye most of the summer. We'd found he had high blood pressure which was complicating that problem. Then his blood test several weeks back showed decreased kidney function. Since this past weekend, his health deteriorated fast. By this afternoon, he was really bad. So shortly after 5, he was put to sleep.
Scott and Derry are both very upset. Jingle was a very old cat - best we know he was just around 20 or just over 20. Scott can't remember not having Jingle, and that cat was beside him all through his treatment. Derry can tell the story about Jingle showing up at their house in Aboyne on Christmas Eve well. Stephanie recalls him hopping in the window, parking by the fire and proclaiming their house as his.
I remember the first time I ever walked in her house in Aboyne. In less than 30 minutes, Jingle was on my lap and lying down for a nap. He had me right off. Stephanie said more than one person made comments about Jingle through the years and his "less than perfect" looks.
We think he was one of the best cats ever. An old scabby-tabby-toonser that never let you down.
Bye bye buddy.
Tuesday, September 15, 2009
pwn'd
VISA so kindly bought us a new playstation (and yes mum I know its an indulgence and yes mum I know its not very grown up to put video games before bills :) No more RockBand on Scott's blog I promise. But damn I love this game. Call it post traumatic stress relief, call it 'mummys lovely big chunk of prozac', whatever it is, it works wonders.
Gotta go now, must knock the legendary wesker off another top spot.
Sunday, September 13, 2009
Cursed by the yellow light of death, which according to Sony is very rare so duh, I guess we should have know it would happen to us!
So sad (and Im not being bloody sarcastic, my Rock Band is inside!)...
David tried heroically for 8 hours to fix it ....
he's going to try again tomorrow with a heat gun and some chewing gun type stuff, weird, but it might just work.
Thursday, September 10, 2009
Just home from clinic and all is well. Scott's bloodwork was okay, not as great as last month's but the doc said not to stress about it. His wbc was 3.5 (low), hgb 14.0 (good), plts 226 (a dip from last month) and mono's 12.1. If it weren't for the slight increase in hgb and decent mono's I'd be very nervous. Anyhow, like I said, the doctor was happy.
He got a full physical and no swollen nodes or spleen were seen, all looked good. Oh yeah, he also got his latest "accident" checked out .... he managed to shoot himself yesterday with his airsoft gun, its amazing what a plastic pellet can do to your pinkie when shot from a few inches!!! Spaz. Then it was port-flush time which Scott went a bit freaky about. Its been 2 months since his last access and he got all tensed up and stopped breathing until his face turned red!! Lastly he had pentadamine to prevent PCP - its possible, all being well, that this might be his last breathing treatment, which would be nice because it hates it.
So, the plan is that in four weeks he'll go back for bloodwork and a spinal tap. If these are both clean then we can schedule to have his port removed. Scott is so looking forward to being port-free as it makes him feel queasy, but more importantly it will mean he can get back on his ice skates and ride the BIG roller coasters at Busch Gardens - previously it was only rides with lap belts as harnesses could jolt the port and cause the port to flip or even detach - which could cause a bit of a mess! He's also quite looking forward to seeing his cool surgeon again - Scott loved him because he had a twisted sense of humour and wore a skull and crossbones bandana.
Well thats all for now folks. Thanks for checking in. Bye. x
He got a full physical and no swollen nodes or spleen were seen, all looked good. Oh yeah, he also got his latest "accident" checked out .... he managed to shoot himself yesterday with his airsoft gun, its amazing what a plastic pellet can do to your pinkie when shot from a few inches!!! Spaz. Then it was port-flush time which Scott went a bit freaky about. Its been 2 months since his last access and he got all tensed up and stopped breathing until his face turned red!! Lastly he had pentadamine to prevent PCP - its possible, all being well, that this might be his last breathing treatment, which would be nice because it hates it.
So, the plan is that in four weeks he'll go back for bloodwork and a spinal tap. If these are both clean then we can schedule to have his port removed. Scott is so looking forward to being port-free as it makes him feel queasy, but more importantly it will mean he can get back on his ice skates and ride the BIG roller coasters at Busch Gardens - previously it was only rides with lap belts as harnesses could jolt the port and cause the port to flip or even detach - which could cause a bit of a mess! He's also quite looking forward to seeing his cool surgeon again - Scott loved him because he had a twisted sense of humour and wore a skull and crossbones bandana.
Well thats all for now folks. Thanks for checking in. Bye. x
Tuesday, September 1, 2009
Tuesday, August 25, 2009
Whomever is in charge of school start times and buses in Hillsborough county is a sadistic twit. 5 bloody fifteen this morning and we’re wandering around in the dark like zombies picking the scabby sleep crusts off our eyes and mumbling something about lunch money. The cats are all like “wtf?” and Derry’s looking like he wants to stab someone.
Anyhow, he doesn’t and goes off to become beautiful and I flip on the light. O horror, horror, horror (said Macduff) and I. I hope that insect doesn’t see me (said Adam Ant) and I. Can you tell I’m sleep deprived – ha!
Ants, big ones, had invaded and were busy having a rave in the cat food bowl. There was a line of them, to-ing and fro-ing, from the pool door, in through the cat flap, across no-mans land and pillaging our fancy feast. Grayt. So whilst I’m being awesome and cooking Derry some lovely bacon and eggs (it probably wont happen again – it’ll be jello pudding cups by the end of the week Im sure), poor David is staggering around like an old drunk, lunging at poor defenseless mutant ants with bug spray and a spatula.
Aaaah, back to school for little Derry sophomore. The end of a wonderful, long summer of warcraft and paling skin.
Scott sleeps on. Homeschooling has many benefits.
Anyhow, he doesn’t and goes off to become beautiful and I flip on the light. O horror, horror, horror (said Macduff) and I. I hope that insect doesn’t see me (said Adam Ant) and I. Can you tell I’m sleep deprived – ha!
Ants, big ones, had invaded and were busy having a rave in the cat food bowl. There was a line of them, to-ing and fro-ing, from the pool door, in through the cat flap, across no-mans land and pillaging our fancy feast. Grayt. So whilst I’m being awesome and cooking Derry some lovely bacon and eggs (it probably wont happen again – it’ll be jello pudding cups by the end of the week Im sure), poor David is staggering around like an old drunk, lunging at poor defenseless mutant ants with bug spray and a spatula.
Aaaah, back to school for little Derry sophomore. The end of a wonderful, long summer of warcraft and paling skin.
Scott sleeps on. Homeschooling has many benefits.
Thursday, August 13, 2009
Wednesday, August 12, 2009
Clinic tomorrow (bloodwork, physical and pentadamine)and Im sweating buckets. Scott doesnt seem too worried and even bought new drawers for the occasion (Stewie Griffin with speech bubble: "so, do you like what you see??" LOL.
I didnt think I'd be too much of a wreck once treatment was complete but Im worse than ever. David even more of a basket-case than me!
I guess that with the safety net of chemo being pulled from under our feet panic has set in. Also, we're now in the danger zone as far as relapse is concerned.
We have had a few reasons to be concerned, his appetite has decreased, mystery bruises, and there was a little petechiae about ten days ago. Yet, Scott has also seemed quite well, his cheeks are nice and rosey and he's got more energy than he's had since before diagnosis. Also no body pain or headaches.
We'll just have to see what tomorrow brings.
I didnt think I'd be too much of a wreck once treatment was complete but Im worse than ever. David even more of a basket-case than me!
I guess that with the safety net of chemo being pulled from under our feet panic has set in. Also, we're now in the danger zone as far as relapse is concerned.
We have had a few reasons to be concerned, his appetite has decreased, mystery bruises, and there was a little petechiae about ten days ago. Yet, Scott has also seemed quite well, his cheeks are nice and rosey and he's got more energy than he's had since before diagnosis. Also no body pain or headaches.
We'll just have to see what tomorrow brings.
Thursday, August 6, 2009
Wednesday, August 5, 2009
ENVY.
So jealous that this guy managed to get his camera in, even more jealous of the young lad who, after a request from Billie Joe asking who could play this song, had the most drop-dead, goosebumpishly INCREDIBLE experience with the band - and did remarkably well. Watch until the end, so damn cool.
Tuesday, August 4, 2009
Yes Billie my love, we did have the time of our lives.
Its gone 1am and I am still awake!!!! Pretty impressive huh? Just home from Green Day and apart from ...
1) I got frisked and had to give up my camera. Damn were they tight on cameras. Even worse than the nazis at Bruce Springsteen shows!
2) No close-up video on the jumbo-tron so could only leer at a very distant Billie-Joe. I am so bitter.
So yup, with the exception of the above, it was phenomenal. Great company in the TECO suite, and Im not just saying that, it really was a nice bunch, and true brilliance, as always, from Green Day. Will write more later. Here's a few pictures from my crappy phone ...
Thursday, July 30, 2009
New Drug For Children With High-risk Leukemia
ScienceDaily (July 30, 2009) — Each year, approximately 4,500 children in America are diagnosed with leukemia, according to the Leukemia and Lymphoma Society. A potentially deadly cancer of the blood, it is the most common cancer in children.
"Modern medicine can cure eight out of 10 cases of childhood leukemia, so parents can still be hopeful when they hear a diagnosis," says Dr. Shai Izraeli of Tel Aviv University's Sackler School of Medicine and Sheba Medical Center. "Our research gives hope and life to the 20% who might not make it as well as those who may experience a relapse."
The first researchers to discover a mutation of the JAK2 protein in patients with Down syndrome, the Tel Aviv University team suspected that this protein might also be linked to other disorders and diseases — and they were right. Based on the successful results of this research a drug that is already in clinical trials for a blood disease common in adults may be relevant for acute childhood leukemia. If initial trials go well, the drug could fast-track through approvals and could be available for treating children with leukemia in only a few years.
The recent findings are based on Dr. Izraeli's original discovery of the JAK2 in Down syndrome, published recently in the prestigious medical journal The Lancet.
Finding a model in children with Down syndrome
According to Dr. Izraeli, a similar mutation of the JAK2 in Down syndrome and leukemia causes Polycythemia Vera, a disease common in adults that leads to the overproduction of blood. This discovery of a similar mutation in a subset of pediatric leukemia cases may provide a path to new life-saving medication options.
Dr. Izraeli first discovered JAK2 mutations in children who initially suffered from Down syndrome and subsequently developed leukemia (a child with Down syndrome is 20 to 30 times more likely to develop leukemia during childhood than a child without it). Dr. Izraeli was then inspired to screen for gene mutations that could result in increased proliferation of cells. In collaboration with the iBFM Study Group, a European childhood leukemia consortium, 90 cases of Down syndrome leukemia from all over Europe were studied. A JAK2 mutation was found in 20% of these cases.
The discovery represents a unique biological phenomenon. "This is perhaps the first example of two very similar — but different — mutations that apparently do the same thing in a cellular protein. But they're associated with two completely different disorders, one that causes polycythemia in adults and the other that causes leukemia in children," says Dr. Izraeli.
"Those children at the highest risk for leukemia may be treated with inhibitors of JAK2," he says. "And because of the existence of polycythemia in adults, there are already drugs to fight polycythemia entering into trials as we speak. We will know in just a few years what these drugs are capable of."
An alternative to chemotherapy
Dr. Izraeli says the discovery offers "potential hope" to children who suffer from leukemia. "JAK2 inhibitors are not based on chemotherapy. The first experiences with these treatments show very few side effects. All that researchers need to do is to expand these clinical trials to children and adults with high-risk leukemia — and that can happen relatively quickly," says Dr. Izraeli.
Dr. Izraeli explains that typical chemotherapies for leukemia also have a high "toxicity cost." Children with leukemia are treated with 10 to 12 different chemotherapies over a period of two to three years. Some of them have long-term and irreversible damage, such as neurological, heart, bone problems and sterility. Researchers looking for viable alternatives may turn to Dr. Izraeli's research as a promising avenue for success.
ScienceDaily (July 30, 2009) — Each year, approximately 4,500 children in America are diagnosed with leukemia, according to the Leukemia and Lymphoma Society. A potentially deadly cancer of the blood, it is the most common cancer in children.
"Modern medicine can cure eight out of 10 cases of childhood leukemia, so parents can still be hopeful when they hear a diagnosis," says Dr. Shai Izraeli of Tel Aviv University's Sackler School of Medicine and Sheba Medical Center. "Our research gives hope and life to the 20% who might not make it as well as those who may experience a relapse."
The first researchers to discover a mutation of the JAK2 protein in patients with Down syndrome, the Tel Aviv University team suspected that this protein might also be linked to other disorders and diseases — and they were right. Based on the successful results of this research a drug that is already in clinical trials for a blood disease common in adults may be relevant for acute childhood leukemia. If initial trials go well, the drug could fast-track through approvals and could be available for treating children with leukemia in only a few years.
The recent findings are based on Dr. Izraeli's original discovery of the JAK2 in Down syndrome, published recently in the prestigious medical journal The Lancet.
Finding a model in children with Down syndrome
According to Dr. Izraeli, a similar mutation of the JAK2 in Down syndrome and leukemia causes Polycythemia Vera, a disease common in adults that leads to the overproduction of blood. This discovery of a similar mutation in a subset of pediatric leukemia cases may provide a path to new life-saving medication options.
Dr. Izraeli first discovered JAK2 mutations in children who initially suffered from Down syndrome and subsequently developed leukemia (a child with Down syndrome is 20 to 30 times more likely to develop leukemia during childhood than a child without it). Dr. Izraeli was then inspired to screen for gene mutations that could result in increased proliferation of cells. In collaboration with the iBFM Study Group, a European childhood leukemia consortium, 90 cases of Down syndrome leukemia from all over Europe were studied. A JAK2 mutation was found in 20% of these cases.
The discovery represents a unique biological phenomenon. "This is perhaps the first example of two very similar — but different — mutations that apparently do the same thing in a cellular protein. But they're associated with two completely different disorders, one that causes polycythemia in adults and the other that causes leukemia in children," says Dr. Izraeli.
"Those children at the highest risk for leukemia may be treated with inhibitors of JAK2," he says. "And because of the existence of polycythemia in adults, there are already drugs to fight polycythemia entering into trials as we speak. We will know in just a few years what these drugs are capable of."
An alternative to chemotherapy
Dr. Izraeli says the discovery offers "potential hope" to children who suffer from leukemia. "JAK2 inhibitors are not based on chemotherapy. The first experiences with these treatments show very few side effects. All that researchers need to do is to expand these clinical trials to children and adults with high-risk leukemia — and that can happen relatively quickly," says Dr. Izraeli.
Dr. Izraeli explains that typical chemotherapies for leukemia also have a high "toxicity cost." Children with leukemia are treated with 10 to 12 different chemotherapies over a period of two to three years. Some of them have long-term and irreversible damage, such as neurological, heart, bone problems and sterility. Researchers looking for viable alternatives may turn to Dr. Izraeli's research as a promising avenue for success.
Tuesday, July 28, 2009
Saturday, July 25, 2009
"I went to a fight the other night, and a hockey game broke out"
We knew it wasn't good when arriving at the ice rink this afternoon to see an ambulance outside. Once inside we see one of Derry's old team mates on the ice surrounded by medics and worried faces. It was horrible, the kid had taken a bad fall, stood up briefly to show 'he was okay', saw his arm facing in the wrong direction, and then collapsed. Turns out he'd broken his arm so bad the bone was poking through the skin. The hockey folks around here are a pretty tight bunch, and to have one of our own hurt, well it hurt.
He wont be playing hockey for a long while I guess, but its an arm and it will heal, just sucks though.
So after a while, once the zamboni had cleaned up the mess, Derry's game got under way. It was an awesome game until Derry got into a check with the scariest, toughest kid on the other team, a legend of a kid, the kid all the other kids skate away from instead of tackle ... well anyway, following the altercation the kid needed to be helped off the ice and is now being 'checked over' in hospital too. Thankfully his dad thinks he's fine, just a bruised ego more than anything. Derry has a sore thumb but is gonna have to watch his back from now on. And just for the record, Derry didnt even get sent to the 'box of shame', the check was perfectly legal. Oh and they won, 5-2.
He wont be playing hockey for a long while I guess, but its an arm and it will heal, just sucks though.
So after a while, once the zamboni had cleaned up the mess, Derry's game got under way. It was an awesome game until Derry got into a check with the scariest, toughest kid on the other team, a legend of a kid, the kid all the other kids skate away from instead of tackle ... well anyway, following the altercation the kid needed to be helped off the ice and is now being 'checked over' in hospital too. Thankfully his dad thinks he's fine, just a bruised ego more than anything. Derry has a sore thumb but is gonna have to watch his back from now on. And just for the record, Derry didnt even get sent to the 'box of shame', the check was perfectly legal. Oh and they won, 5-2.
Monday, July 20, 2009
New Strategy In Tumor Treatment
ScienceDaily (July 20, 2009) — A new strategy proposed by researchers at Dartmouth Medical School and Amtek, Hanover, NH may treat tumors that do not respond to conventional treatment. The study uses a combination of two agents to selectively kill tumors while protecting healthy cells.
In previous studies, researchers discovered that a specific enzyme – known as methylthioadenosine phosphorylase (MTAP) – is missing in 35 to 70 percent of lung, pancreatic and biliary tract cancer, melanoma, glioblastoma, osteosarcoma, soft-tissue sarcoma, mesothelioma, and T-cell acute lymphoblastic leukemia. Although information on the incidence of MTAP-deficiency in breast cancer is still limited, researchers believe it is probably significant.1 Since the discovery of MTAP-negative tumors, there have been several proposals, over the years, to take advantage of the frequent absence of MTAP in so many lethal cancers. None of these proposals, however, has led to successful clinical use.
Dr. Martin Lubin, Professor of Microbiology, Emeritus, and co-author Adam Lubin of Amtek have offered a new approach. They say, "Our strategy consists of two agents. One drug is given that is toxic both to cancer cells and to normal host tissues. A second, but non-toxic, drug is also given, which protects normal tissues from the toxic action of the first agent. This two-drug combination therapy kills tumor cells while normal tissues are well protected." They go on to state, "Among the drugs used to kill the tumor cells, two -- thioguanine and fluorouracil (or its prodrug Xeloda) - are already in clinical use. In general, the dose of these drugs is limited by toxic side effects. However, with our strategy, greatly increased doses might be used and tumors not susceptible to low doses could be attacked successfully at higher doses, without harm to host tissues."
To assess the selective killing of tumor cells when they were present in excess of normal cells, the researchers designed co-culture experiments in vitro and animal studies are now in progress.
"We hope that successful animal studies will lead to clinical application as soon as possible," Dr. Lubin said.
The authors have applied for a patent based on the work presented.
1. Reference: Della Ragione F, Russo G, Oliva A, Mastropietro S, Mancini A, et al. (1995) 5′-Deoxy-5′-methylthioadenosine phosphorylase and p16INK4 deficiency in multiple tumor cell lines. Oncogene 10: 827-833.
ScienceDaily (July 20, 2009) — A new strategy proposed by researchers at Dartmouth Medical School and Amtek, Hanover, NH may treat tumors that do not respond to conventional treatment. The study uses a combination of two agents to selectively kill tumors while protecting healthy cells.
In previous studies, researchers discovered that a specific enzyme – known as methylthioadenosine phosphorylase (MTAP) – is missing in 35 to 70 percent of lung, pancreatic and biliary tract cancer, melanoma, glioblastoma, osteosarcoma, soft-tissue sarcoma, mesothelioma, and T-cell acute lymphoblastic leukemia. Although information on the incidence of MTAP-deficiency in breast cancer is still limited, researchers believe it is probably significant.1 Since the discovery of MTAP-negative tumors, there have been several proposals, over the years, to take advantage of the frequent absence of MTAP in so many lethal cancers. None of these proposals, however, has led to successful clinical use.
Dr. Martin Lubin, Professor of Microbiology, Emeritus, and co-author Adam Lubin of Amtek have offered a new approach. They say, "Our strategy consists of two agents. One drug is given that is toxic both to cancer cells and to normal host tissues. A second, but non-toxic, drug is also given, which protects normal tissues from the toxic action of the first agent. This two-drug combination therapy kills tumor cells while normal tissues are well protected." They go on to state, "Among the drugs used to kill the tumor cells, two -- thioguanine and fluorouracil (or its prodrug Xeloda) - are already in clinical use. In general, the dose of these drugs is limited by toxic side effects. However, with our strategy, greatly increased doses might be used and tumors not susceptible to low doses could be attacked successfully at higher doses, without harm to host tissues."
To assess the selective killing of tumor cells when they were present in excess of normal cells, the researchers designed co-culture experiments in vitro and animal studies are now in progress.
"We hope that successful animal studies will lead to clinical application as soon as possible," Dr. Lubin said.
The authors have applied for a patent based on the work presented.
1. Reference: Della Ragione F, Russo G, Oliva A, Mastropietro S, Mancini A, et al. (1995) 5′-Deoxy-5′-methylthioadenosine phosphorylase and p16INK4 deficiency in multiple tumor cell lines. Oncogene 10: 827-833.
Saturday, July 18, 2009
A couple of pictures from the hockey game today. Derry's team won 6-2, they are currently fourth in the league with two games left before the semi-finals.
It sucks to only be able to take bench pictures but my lousy camera isn't good enough for zooming onto the ice, or for speed.
And here is gammy eyed Jingle. He was back at the regular vet this morning and wowed everyone with his now perfect blood pressure and healing corneal ulcer. Next week he has the specialist again. You cant tell from the picture but his right eye is deep red. The vet reckoned it probably always will be as the blood from the ruptured capillaries seeped into his iris. Jingle was adopted as a kitten from 'Mrs Murray's home for stray cats and dogs' down by the docks in cold, damp Aberdeen about twenty years ago, now he's living out his elder years basking in the Florida sun. Not bad for an 'auld orphan toonser'.
for me mum
I absolutely cannot believe you asked "who are Green Day?" I'm shocked and stunned. But here they are, you may want to turn a fan on first and make sure you've taken your hormones or you might just explode.
Friday, July 17, 2009
Thursday, July 16, 2009
Wednesday, July 15, 2009
Scott’s bloodwork looked pretty good. Anc 2500, hgb 13.6 (WOW!!), monocytes 11 and wbc 3.9. I was hoping the white count would be a little higher but was reassured that this was perfectly fine. Hopefully as time goes by it will creep up to normal. Some of his chemistries were a little off but again was told there was nothing major to worry about. His spinal tap was done with no problems but we won’t have the results for a day or two.
Sadly though, a little boy at our clinic died this morning. Thai had been fighting t-cell lymphoma (which is very similar and treated the same as t-cell leukemia) for many years and was one of the bravest, smiliest kids I’ve ever had the privilege to meet. He was truly awesome. A sad day. Rest easy little Thai.
http://www.caringbridge.org/visit/thai10
Sadly though, a little boy at our clinic died this morning. Thai had been fighting t-cell lymphoma (which is very similar and treated the same as t-cell leukemia) for many years and was one of the bravest, smiliest kids I’ve ever had the privilege to meet. He was truly awesome. A sad day. Rest easy little Thai.
http://www.caringbridge.org/visit/thai10
Tuesday, July 14, 2009
Its been five weeks since Scott's last clinic appointment (put back a week due to Dezzys birthday), but tomorrow we're back in again. Scott will have bloodwork done, his pentadamine breathing treatment, a physical and a spinal tap.
Its been a good break between appointments and Scott is feeling better than he has in a long, long time. He's eating well (although perhaps scoffing down a little TOO much), the neuropathy is easing, he's playing with friends out in the street and looking good with pink rosy cheeks, and incredibly, during the last couple of weeks, has detoxed and kicked his codeine and ativan habit! We are so proud of him and relieved that he's no longer leaning on narcotics to calm him down or take the edge off the pain. I think even he agrees now that being able to go outside and play is better stress-relief than ativan, demerol, and all that good stuff.
On the surface all seems well and groovy, yet a return of acute leukemia would be seen in the blood and spinal fluid before symptoms were seen.
So, we worry. And probably, we always will.
Anyway, like they always say, nothing like a good old fashioned sing-song to chase away the cancer-clinic blues ...
Its been a good break between appointments and Scott is feeling better than he has in a long, long time. He's eating well (although perhaps scoffing down a little TOO much), the neuropathy is easing, he's playing with friends out in the street and looking good with pink rosy cheeks, and incredibly, during the last couple of weeks, has detoxed and kicked his codeine and ativan habit! We are so proud of him and relieved that he's no longer leaning on narcotics to calm him down or take the edge off the pain. I think even he agrees now that being able to go outside and play is better stress-relief than ativan, demerol, and all that good stuff.
On the surface all seems well and groovy, yet a return of acute leukemia would be seen in the blood and spinal fluid before symptoms were seen.
So, we worry. And probably, we always will.
Anyway, like they always say, nothing like a good old fashioned sing-song to chase away the cancer-clinic blues ...
Friday, July 10, 2009
Yesterday our precious little Derry turned 15!! And unlike previous birthdays, disaster didnt strike and the day (which mostly consisted of building furniture, installing software, ooooing, aaaaahing and eating) went perfectly. Here he is, too cool to smile or even look at the camera, with his new toys ...
And here is "Bannockburn", Prince of the frozen wastes, destroyer of all that is good, slayer of fluffy kittens and master sock thief, or something like that. Believe it or not, this top level character which he has built over the last couple of years could be sold for around a thousand dollars, in part due to a rare 'picnic basket' add-on won on a gaming card. LOL. Oh yeah baby, and who says gaming doesnt pay?
On to our Jingle cat. Jingle has been at the vet every few days now for the last month and at his last visit (Tuesday) we were told that there was nothing more the vet could do. His ulcer had improved but was still very bad but more worryingly his eye was filling up with blood. The retina had become damaged and scarred and his vision was almost certainly gone in that eye. The vet seemed to think there was a very good chance he had a tumour behind the ulcer (in most cases tumours in cats are cancerous) and recommended we see an animal eye specialist in Tampa. I must admit I was ready to have Jingle put to sleep, and suggested it twice, hell he's 20 years old and there is no way Im putting him through any undue stress, pain, surgery or whatever, at his age. But anyway, David and the vet said that we should at least get to the bottom of it and see the specialist, so today we did, and would you believe it, there is no cancer, just a very bad ulcer and high blood pressure!! The high bp has caused capilliaries in his eye to burst and that is why we're now seeing a blood filled eye. So he is now on the full-spectrum ulcer meds, canine serum (thank you doggie blood donor!) and a blood pressure medicine the same as Scott had to take. The vet said that because the ulcer was so deep Jingle definately wasnt in any pain but its highly likely he is having mild headaches due to the bp. Anyway, hopefully now my raggedy old kitty will start to get better and live for many, many more years ... or a few months at least. Here he is looking a bit pathetic...but alive, oh, he's still a-live, ohhhhhhhh, he, ohhh, he's still alive ...
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