It’s been a good weekend. I hesitated writing those words, I guess I’m just a weirdo, but whenever I write, or even think, things are going well, I feel like I am jinxing us. Strange huh? We walk such a precarious path but this weekend our path was lined with beautiful flowers and butterflies (I know ... how gay), but it’s worrying, will the path hear me and decide to throw down a rockslide just for the sheer hell of it? Am I losing my mind? LOL.
So yeah, as I was saying (quietly so the path doesn’t hear), good weekend.
Yesterday we had a day out!!!!! A normal, family day out. David had to work for a while in the morning, but that was good, gave me a chance to clean the house. Boy do I HATE coming home to an untidy house! So the house was clean and tidy, as were we (all of us at the same time) and off we went to Busch Gardens.
I was very concerned, and quite sure that, we would get there, Scott would have a meltdown, and we’d be on our way home again, scolding ourselves for being so silly as to even consider the idea of a ‘day out’. But nope, all went . Scott didn’t get sick; he didn’t even get grumpy or freaked out by the crowds. Derry didn’t moan about needing to get home to World of Warcraft. David was in rollercoaster heaven and only moaned once when I tried to steer everyone into a shop. I rode my very first water ride (I hate rides) because, as everyone kept telling me, if Scott can go through all this shit, I can damn sure ride a scary ride. So I did. And it was okay. In fact it was kind of fun in a cold and dampish kind of way.
So anyway we did Busch Gardens. David and Scott rode heaps of rollercoaster’s and Scott didn’t even feel in the least bit sick which is bloody amazing if you ask me! Derry is like me and hates rollercoaster’s. We just don’t understand it. I think we both would rather walk across hot coals than go through the hell of risking life and limb on a pile of rusty scaffolding. We looked at the animals and ate lots of junk; we basked in the sunshine and had a great day. We did see something very cool too. Whilst watching the tigers in the new section of the park – Jungala – we saw, twice, a juvenile Bengal charge the glass and aim to attack, and presumably kill, a couple of very young toddlers. It was awesome, even the babies seemed to think so. The parents thought it hilarious too. This tiger wasn’t playing around. First it stared at the baby, never taking its eyes off for a second, its tail was waving around, hackles up doing that one-sided lip snarl thing that they do, then it pounced at the glass, it wanted to eat a baby! There was a huge crowd and everyone was like “wow, very cool". I posted a photo, not one of the best, but I didnt want to put the babies faces on the internet. I have to say though, for some reason, be it the glass or perspective, that tiger doesnt look nearly as big in the photo as it did in real life.
Today we had another good day. Most Sundays we end up mad at ourselves for sitting around doing nothing but today we did heaps of gardening (yard work), inspired by, and continuing on from the work my Mum started whilst she was here. Thankfully we didnt come across any snakes - Scott and I saw a dead Copperhead the other day - David said they can be very nasty indeed. Derry and Scott played NICELY, I got a palm needle embedded in my foot which David surgically removed with toe nail clippers and Derry completed his school project – one day ahead of time!!! Incredible.
His project was to write fifteen poems, not something he is very passionate about it has to be said. However once I told him that there are no rules in literature and he could write about whatever he liked he loosened up a bit and now has a stack of poems and pictures to hand in, on computers and gaming! Oh yes, we have poems on World of Warcraft (ofcourse), Portal and the death of the Companion Cube, the beauty which is the Xbox controller, the anguish of the server being down, Gears of War and other such delights.
Well I getting tired so I think I’ll hit ‘post’ and get to bed. Hope you like the ‘demise of the Companion Cube’; just a taste of what it’s like living with 3 geeks. G’night.
Scott & Sunny
Sunday, April 27, 2008
Thursday, April 24, 2008
Today's bloodwork looked very good (huge sigh of relief!). Scott's anc was 1990 and platelets 273. Biliruben high again but not at the scary levels of past weeks.
I have been so worried about him in the last few days. He has been feeling sicker than normal and he's also been very irritable and restless. Its hard I suppose for a non-cancer mum to understand, but when you are going through this you find yourself constantly looking for warning signs, to the point where every single little bruise must be accounted for, or complete terror sets in. This applies to siblings also. Poor Derry gets it as well! I guess paranoia and hypochondria-by-proxy (??) are just par for the course.
Scott also had the honour of being followed around by a camera man today. It is for something Pat Padraja is doing (damn when does Pat ever slow down!) to raise awareness (I think) and seeing as Pat was hanging out with Scott, then Scott got the paparazzi treatment also.
Well thats it, I'll leave you with a photo of Scott at the park last night. We've started heading over there after tea (dinner) for a bit and loitering with the 'suspicious' people. Yeah baby, thats right, we so wild and crazy! Living life in the fast lane .. thats us!
I have been so worried about him in the last few days. He has been feeling sicker than normal and he's also been very irritable and restless. Its hard I suppose for a non-cancer mum to understand, but when you are going through this you find yourself constantly looking for warning signs, to the point where every single little bruise must be accounted for, or complete terror sets in. This applies to siblings also. Poor Derry gets it as well! I guess paranoia and hypochondria-by-proxy (??) are just par for the course.
Scott also had the honour of being followed around by a camera man today. It is for something Pat Padraja is doing (damn when does Pat ever slow down!) to raise awareness (I think) and seeing as Pat was hanging out with Scott, then Scott got the paparazzi treatment also.
Well thats it, I'll leave you with a photo of Scott at the park last night. We've started heading over there after tea (dinner) for a bit and loitering with the 'suspicious' people. Yeah baby, thats right, we so wild and crazy! Living life in the fast lane .. thats us!
Monday, April 21, 2008
Okay, time for a bit on a Scotty update. It’s been a while.
Well he finally got over last weeks pain and fed-up-ness. What a week. It seems like each new dose of vincristine gets harder and harder on him. The doc did say that this happens with some children while for others it gets easier. Trust us to pick the tough route. Thankfully we didn’t get a call about his spinal fluid, which I would guess by now means there was nothing funky found. Dr O. said it looked clean when it was removed, often if leukemia is present the spinal fluid looks cloudy or yellow. When he has a spinal not only do they remove fluid they also inject 2 different chemo drugs. This led to him being very sore for about a week after.
Remember, at diagnosis his spine was clear of leukemia. For most children it is, but that doesn’t mean it cant relapse in that area – or the marrow – or his little boy bits!
Anyhow, back to now.
Yesterday he was looking really good. It was wonderful to see him smiling and with a little of the old Scott peeking through. Sadly it didn’t last long and this morning he woke up feeing horrible. He has had tummy ache and head ache all day and nothing is shifting it. Obviously that has me worried about what is going on. His blood work last week looked okay but with this damn disease things can change very quickly.
We did manage to get a fair bit of school work done though. It kind of took his mind off all his aches and pains. David is doing Maths with him as it’s just not my cup of tea at all. I can add up and take away and at no point in my life have ever needed to calculate what ‘x’ is. Completely overrated school subject in my opinion. And damn, I tell you, American schools just seem to drill it above all else. When I was at Aboyne Acadamy we did about 4 hours of Maths a week and so had time left over for an abundance of more interesting work. Stuff like metal work, swimming, SE (sex and drugs education), RE (religious education), French and drama. Och well, I’d best get off my soap box.
However, Scott is doing great in all his subjects. He is currently studying Mesopotamia and King Hammurabi – fascinating! In Language Arts we are doing Greek and modern day heroes and the study of the monomyth – right up my street – LOL. Hopefully science will come on line any day now and once he is handling all 4 subjects we will try and add something else. I am so impressed with Florida Virtual School, sounds like a cliché, but it does seem to making learning ‘fun’.
I know I haven’t said anything yet about my Mums visit. Whilst she was here Scott wasn’t up to much at all. We did manage to see a movie, go putting a few times and eat lots of icecream and pizza but for the most part we just hung out here and tried to keep Scott comfortable and amused. She planted some beautiful new flowers in the garden and did all my ironing so that was nice. :) Hopefully the next time she visits Scott will be feeling a little happier.
Well must go now, my fingers hurt. I’ll leave
you with a few random photos ..
Well he finally got over last weeks pain and fed-up-ness. What a week. It seems like each new dose of vincristine gets harder and harder on him. The doc did say that this happens with some children while for others it gets easier. Trust us to pick the tough route. Thankfully we didn’t get a call about his spinal fluid, which I would guess by now means there was nothing funky found. Dr O. said it looked clean when it was removed, often if leukemia is present the spinal fluid looks cloudy or yellow. When he has a spinal not only do they remove fluid they also inject 2 different chemo drugs. This led to him being very sore for about a week after.
Remember, at diagnosis his spine was clear of leukemia. For most children it is, but that doesn’t mean it cant relapse in that area – or the marrow – or his little boy bits!
Anyhow, back to now.
Yesterday he was looking really good. It was wonderful to see him smiling and with a little of the old Scott peeking through. Sadly it didn’t last long and this morning he woke up feeing horrible. He has had tummy ache and head ache all day and nothing is shifting it. Obviously that has me worried about what is going on. His blood work last week looked okay but with this damn disease things can change very quickly.
We did manage to get a fair bit of school work done though. It kind of took his mind off all his aches and pains. David is doing Maths with him as it’s just not my cup of tea at all. I can add up and take away and at no point in my life have ever needed to calculate what ‘x’ is. Completely overrated school subject in my opinion. And damn, I tell you, American schools just seem to drill it above all else. When I was at Aboyne Acadamy we did about 4 hours of Maths a week and so had time left over for an abundance of more interesting work. Stuff like metal work, swimming, SE (sex and drugs education), RE (religious education), French and drama. Och well, I’d best get off my soap box.
However, Scott is doing great in all his subjects. He is currently studying Mesopotamia and King Hammurabi – fascinating! In Language Arts we are doing Greek and modern day heroes and the study of the monomyth – right up my street – LOL. Hopefully science will come on line any day now and once he is handling all 4 subjects we will try and add something else. I am so impressed with Florida Virtual School, sounds like a cliché, but it does seem to making learning ‘fun’.
I know I haven’t said anything yet about my Mums visit. Whilst she was here Scott wasn’t up to much at all. We did manage to see a movie, go putting a few times and eat lots of icecream and pizza but for the most part we just hung out here and tried to keep Scott comfortable and amused. She planted some beautiful new flowers in the garden and did all my ironing so that was nice. :) Hopefully the next time she visits Scott will be feeling a little happier.
Well must go now, my fingers hurt. I’ll leave
you with a few random photos ..Hands up who loves Bon Jovi
If you dont, go stand in the corner until you're sorry!
For my Mum who truly 'lives her life' and is having knee surgery today and for Eric who is recovering from a hip replacement.
For all the little ones fighting cancer. Especially for them.
And for Scott, may he come to realise that his wish trip should be to meet, and sing this song with, the lovely Jon Bon Jovi!!! And yes, he is actually considering it! EEEEEEEEEEEEEE! :)
For my Mum who truly 'lives her life' and is having knee surgery today and for Eric who is recovering from a hip replacement.
For all the little ones fighting cancer. Especially for them.
And for Scott, may he come to realise that his wish trip should be to meet, and sing this song with, the lovely Jon Bon Jovi!!! And yes, he is actually considering it! EEEEEEEEEEEEEE! :)
Friday, April 18, 2008
Rest in Peace Phantom Dan
Yesterday I learned that an old friend of mine passed away.
I became friends with Danny a few years back and if it hadn’t been for him I would never have met David and so for that reason alone he has a place in my heart. But before that we hung out for a little while. I had some mind blowing days (as any E Street Band fan could appreciate I’m sure) and along the way he showed me that there is life outside of a small Scottish village.
Later he met David, in a backstage ‘tent’ at a Darien Lake fairground in Buffalo, he gave me the nod of approval and that was the last time I saw him.
I believe he did read this blog from time to time. Danny could relate. He had cancer also.
I am so sad he is gone. He'll be missed by so many. Like another friend said yesterday, “the heavenly band must have needed a kick-ass organ player”. I like that. :)
This bootleg is kind of special for me. My sister too. And her crazy x-boyfriend. WHAT A NIGHT we had!!
“Come on up for the Rising”…
I became friends with Danny a few years back and if it hadn’t been for him I would never have met David and so for that reason alone he has a place in my heart. But before that we hung out for a little while. I had some mind blowing days (as any E Street Band fan could appreciate I’m sure) and along the way he showed me that there is life outside of a small Scottish village.
Later he met David, in a backstage ‘tent’ at a Darien Lake fairground in Buffalo, he gave me the nod of approval and that was the last time I saw him.
I believe he did read this blog from time to time. Danny could relate. He had cancer also.
I am so sad he is gone. He'll be missed by so many. Like another friend said yesterday, “the heavenly band must have needed a kick-ass organ player”. I like that. :)
This bootleg is kind of special for me. My sister too. And her crazy x-boyfriend. WHAT A NIGHT we had!!
“Come on up for the Rising”…
Yesterday was a tough day. Many times Stephanie has written about little Matthew Gliddon. Matthew had relapsed late last year and a lot of complications followed. He was on a plan to prep for a bone marrow transplant, but then began having infection problems. Things got more complicated. Too complicated to go into here.
Matthew lost his fight Wednesday while at home with his parents.
There just are no other words.
Rest in peace little Matthew.
Matthew lost his fight Wednesday while at home with his parents.
There just are no other words.
Rest in peace little Matthew.
Thursday, April 17, 2008
Clinic Day
Today obviously was clinic day. Scott's counts were good and he got methotrexate through his port. It was a very busy, chaotic, noisy day in the clinic. Scott was chirpy and upbeat this morning, but was fed up and silent by the end of treatment. Part of the reason was Doc Rossbach wouldn't write another script for Tylenol/Codeine just yet. Scott has went through the last batch quickly with all the Vincristine pain. We're going to try a couple of other "lighter" things. But needless to say, Scott was not happy about the prospect of his bottle of magic elixir running dry.
I hope he cheers up this afternoon, as he was in a great mood and mindset this morning. Just seems each time he starts a good day, something comes along and smashes it.
He is progressing in his "virtual school" classes. The math class just got started this past week, so now I'm involved (as Stephanie just does not like "numbers"). We've been rather well pleased with the program, and Scott has taken to it with a positive outlook overall. That's good, as we have to get his brain churning on a regular basis.
Christine (Stephanie's mum) made it back to the Isle of Wight all in one piece. However, she's do for a bit of a knee operation on Monday, so we hope that all goes well. Eric (Christine's husband, Stephanie's stepdad) is just a couple months past having a hip replacement operation and is progressing well. We owe both of them a huge THANK YOU for their generosity. Eric lost his first wife to cancer, and knows very well the type of things we face through this ordeal. Again, family does something amazing.
I hope he cheers up this afternoon, as he was in a great mood and mindset this morning. Just seems each time he starts a good day, something comes along and smashes it.
He is progressing in his "virtual school" classes. The math class just got started this past week, so now I'm involved (as Stephanie just does not like "numbers"). We've been rather well pleased with the program, and Scott has taken to it with a positive outlook overall. That's good, as we have to get his brain churning on a regular basis.
Christine (Stephanie's mum) made it back to the Isle of Wight all in one piece. However, she's do for a bit of a knee operation on Monday, so we hope that all goes well. Eric (Christine's husband, Stephanie's stepdad) is just a couple months past having a hip replacement operation and is progressing well. We owe both of them a huge THANK YOU for their generosity. Eric lost his first wife to cancer, and knows very well the type of things we face through this ordeal. Again, family does something amazing.
Thursday, April 10, 2008
It's been a week
It's been a week since we've posted. Largely due to being off work, out of school and Stephanie's mum having arrived last Thursday. She arrived just a day before I headed off for our annual golf trip (which got shelved last year).
As I said, Stephanie's mum arrived a week ago. They've been out and about while I was away with the "guys". Stephanie will have to fill you in on everything they've been up to in the last week.
I got away to Gulf Shores for 4 days with my buddies. It was the first time I'd been away from home or from Scott for more than one night, and that was a bit awkward. At times I'd be playing golf and out of the blue just think to myself "why the hell am I here?". I have a kid with cancer, and one feels very guilty doing something as normal as playing some golf, especially being away from him. So many things go wrong out of the blue with these children, one never knows when the call/email may come that sends you rushing back as quick as possible. I must say, it's a very uncomfortable feeling when you think "wow, if something happens, I have to take off and drive for 8 hours just to get there". Makes me wish our golf trip was close by. Maybe we'll do that next year. But I did have a good time, and do feel a little less like I may have a heart attack at any given moment. I'm just glad I have friends (4 of the 8 of us started 1st grade together) that I can do such a trip with, especially now. They're a group of guys which won't allow me to wallow in despair, else they'll smack me around a bit. We all know what each other has experienced through most of life, and we all know how to reel back in each other's sanity a bit.
On to Scott....today was clinic day, and Scott's counts came back good so all chemo was a "go". It was also spinal tap day. These treatments only happen a few times in his protocol, and he's knocked out for the process. I don't think he ever believed us about how quickly he goes to sleep, so he wanted that part of the procedure filmed. I've posted it at the bottom of this post. If you find it weird that we see humor in the process, well, having a kid with such a disease makes one a bit warped and we were a bit that way at the outset. He's feeling okay now, especially after eating pizza and taking some Tylenol/Codeine for his back. We're just awaiting the joy that is "steroid effect/vincristine pain" days. They can be a bundle of fun. We'll see how it goes, as we are trying some type of additive this time round. Glutamic acid I believe, which has helped some kids with vincristine pain. It's not another drug, just an additive found at any nutritional store. The docs said give it a go, so we'll see.
So without further ado, here's Scott being zonked out to have a large needle shoved in his spine.
As I said, Stephanie's mum arrived a week ago. They've been out and about while I was away with the "guys". Stephanie will have to fill you in on everything they've been up to in the last week.
I got away to Gulf Shores for 4 days with my buddies. It was the first time I'd been away from home or from Scott for more than one night, and that was a bit awkward. At times I'd be playing golf and out of the blue just think to myself "why the hell am I here?". I have a kid with cancer, and one feels very guilty doing something as normal as playing some golf, especially being away from him. So many things go wrong out of the blue with these children, one never knows when the call/email may come that sends you rushing back as quick as possible. I must say, it's a very uncomfortable feeling when you think "wow, if something happens, I have to take off and drive for 8 hours just to get there". Makes me wish our golf trip was close by. Maybe we'll do that next year. But I did have a good time, and do feel a little less like I may have a heart attack at any given moment. I'm just glad I have friends (4 of the 8 of us started 1st grade together) that I can do such a trip with, especially now. They're a group of guys which won't allow me to wallow in despair, else they'll smack me around a bit. We all know what each other has experienced through most of life, and we all know how to reel back in each other's sanity a bit.
On to Scott....today was clinic day, and Scott's counts came back good so all chemo was a "go". It was also spinal tap day. These treatments only happen a few times in his protocol, and he's knocked out for the process. I don't think he ever believed us about how quickly he goes to sleep, so he wanted that part of the procedure filmed. I've posted it at the bottom of this post. If you find it weird that we see humor in the process, well, having a kid with such a disease makes one a bit warped and we were a bit that way at the outset. He's feeling okay now, especially after eating pizza and taking some Tylenol/Codeine for his back. We're just awaiting the joy that is "steroid effect/vincristine pain" days. They can be a bundle of fun. We'll see how it goes, as we are trying some type of additive this time round. Glutamic acid I believe, which has helped some kids with vincristine pain. It's not another drug, just an additive found at any nutritional store. The docs said give it a go, so we'll see.
So without further ado, here's Scott being zonked out to have a large needle shoved in his spine.
Thursday, April 3, 2008
For the first time in over 14 months Thursday has rolled around but Scotty doesn’t have to go for chemo!
Instead he had clinic yesterday and thankfully his blood work came back looking good. Another high anc (still low for a healthy person mind you) which is obviously better than a neutropenic/very low anc but will likely mean increased chemo next week. They will continue tweaking with the chemo until regular low (ish) counts are seen. If cells are allowed to flourish in the blood this also means leukemic cells may come back also. Its a vey fine balancing act.
Scott also had his breathing treatment yesterday which went very well but made him feel ill later in the day. The poor kid had a complete meltdown last night, I guess every now and then the emotional crap really takes its toll and just has to come out. I’m still holding on the anti-depressants, I’d rather deal with the issues and get through them every day rather than give him another pill. But we’ll see, the mental aspect of this is really starting to rear its ugly head.
David is also still feeling pretty darn bad and now has a weird and painful side effect from the antibiotics he had been taking. So the two of them last night, both thoroughly miserable, were not a pretty sight.
Anyhow, today should be a better day.
The reason for switching days is because Scott was asked by the Children’s Cancer Centre to take part in the filming of a commercial for a new section of the park at Busch Gardens. It is called Jungala and one of the main attractions is a very cool zip line. So Scott got up early this morning and went with David to try out the new ride and take part in the filming. Should be a great day and I can’t wait to hear all about it.
I am staying home and cleaning. Well at least I’m supposed to be; instead I’m cruising the internet and updating the blog. Maybe I’ll get out my mop and bucket after the next cup of coffee. I’m gonna have to – MY MUM IS COMING!! Aaaaaarghhh!! Panic! Panic! Panic!
She is probably over Ireland right now and heading to Philadelphia. Then she has a three hour wait until her flight to Tampa. We’re all really excited, having Nana around is wonderful, she does so much to help and does all sorts of cool stuff with the boys. I know she will put me to shame and actually fly Scotts kite with him rather than let it sit in the corner of the room, never built and never flown. And on Saturday she will see Derry play hockey and will probably embarrass the hell out of him, but I guess that’s what Nana’s are supposed to do.
She also has with her my Dad’s claddagh ring he always wore. Dad died without a penny (and lots of bills) to his name which the more I think about the more I like. He lived for the day and enjoyed it. He wasnt really your conventional sort of Dad, more of a wild rover and free spirit. All he left were personal items and I claimed his claddagh. Its going to be kind of weird to see it again.
EDIT: Well, so much for a fun day at Busch Gardens. Poor Scott took a fall from a rope climbey thing and came home after just a couple of hours quite hysterical and claiming how much the whole wide world just hates him. He has a big angry bruise on his back and another on his arm. He's calmed down a bit now, after a shot of codeine, but not a happy chappy thats for sure. :(
Instead he had clinic yesterday and thankfully his blood work came back looking good. Another high anc (still low for a healthy person mind you) which is obviously better than a neutropenic/very low anc but will likely mean increased chemo next week. They will continue tweaking with the chemo until regular low (ish) counts are seen. If cells are allowed to flourish in the blood this also means leukemic cells may come back also. Its a vey fine balancing act.
Scott also had his breathing treatment yesterday which went very well but made him feel ill later in the day. The poor kid had a complete meltdown last night, I guess every now and then the emotional crap really takes its toll and just has to come out. I’m still holding on the anti-depressants, I’d rather deal with the issues and get through them every day rather than give him another pill. But we’ll see, the mental aspect of this is really starting to rear its ugly head.
David is also still feeling pretty darn bad and now has a weird and painful side effect from the antibiotics he had been taking. So the two of them last night, both thoroughly miserable, were not a pretty sight.
Anyhow, today should be a better day.
The reason for switching days is because Scott was asked by the Children’s Cancer Centre to take part in the filming of a commercial for a new section of the park at Busch Gardens. It is called Jungala and one of the main attractions is a very cool zip line. So Scott got up early this morning and went with David to try out the new ride and take part in the filming. Should be a great day and I can’t wait to hear all about it.
I am staying home and cleaning. Well at least I’m supposed to be; instead I’m cruising the internet and updating the blog. Maybe I’ll get out my mop and bucket after the next cup of coffee. I’m gonna have to – MY MUM IS COMING!! Aaaaaarghhh!! Panic! Panic! Panic!
She is probably over Ireland right now and heading to Philadelphia. Then she has a three hour wait until her flight to Tampa. We’re all really excited, having Nana around is wonderful, she does so much to help and does all sorts of cool stuff with the boys. I know she will put me to shame and actually fly Scotts kite with him rather than let it sit in the corner of the room, never built and never flown. And on Saturday she will see Derry play hockey and will probably embarrass the hell out of him, but I guess that’s what Nana’s are supposed to do.
She also has with her my Dad’s claddagh ring he always wore. Dad died without a penny (and lots of bills) to his name which the more I think about the more I like. He lived for the day and enjoyed it. He wasnt really your conventional sort of Dad, more of a wild rover and free spirit. All he left were personal items and I claimed his claddagh. Its going to be kind of weird to see it again.
EDIT: Well, so much for a fun day at Busch Gardens. Poor Scott took a fall from a rope climbey thing and came home after just a couple of hours quite hysterical and claiming how much the whole wide world just hates him. He has a big angry bruise on his back and another on his arm. He's calmed down a bit now, after a shot of codeine, but not a happy chappy thats for sure. :(
Monday, March 31, 2008
Scott has been feeling great these last few days, it is simply wonderful. I even remarked to David earlier “he’s starting to look like a normal kid again”. No longer do people look at him ‘funny’ or with curiosity or pity. He still has his round face but is getting a little colour in his cheeks and it’s even getting to the stage where he needs a hair cut!! My friend Paolo at Toni & Guy promised him a makeover whenever he wanted but so far Scott is refusing and vowing never again to cut his hair.
He has been working hard with the Florida Virtual School and recently started a new course studying World Cultures. Today he sat for three hours totally engrossed in an interactive exercise, building a ziggurat. He loves to learn about the ancients and if my brainwashing goes according to plan in ten years he’ll be off to the Great Rift Valley, a trowel in one hand and a toothbrush in the other.
David is starting to feel better and is now on some pretty heavy duty antibiotics which have given him a bit of a ‘Chernobyl’ look but did thankfully, stop the pain and fever.
Well that’s it for now, we have a busy week ahead and all being well lots of good stuff to look forward to. I’ll leave you with a beautiful song by Oasis. Scott loves Oasis. Scott has great taste!
He has been working hard with the Florida Virtual School and recently started a new course studying World Cultures. Today he sat for three hours totally engrossed in an interactive exercise, building a ziggurat. He loves to learn about the ancients and if my brainwashing goes according to plan in ten years he’ll be off to the Great Rift Valley, a trowel in one hand and a toothbrush in the other.
David is starting to feel better and is now on some pretty heavy duty antibiotics which have given him a bit of a ‘Chernobyl’ look but did thankfully, stop the pain and fever.
Well that’s it for now, we have a busy week ahead and all being well lots of good stuff to look forward to. I’ll leave you with a beautiful song by Oasis. Scott loves Oasis. Scott has great taste!
Saturday, March 29, 2008
Scott is feeling much better than a few days ago thankfully. The pains have gone and the emotional turmoil and moodiness from the steroids have subsided. Hopefully we shall now have a couple of weeks of Scott feeling somewhat 'normal'. The next big chemo (a week on Thursday) will also involve ara 'c' and methotrexate being injected into his spine. This is something he hates, it leaves him with backache for a few days but the most traumatic part is Scott's reaction to anaesthesia.





They look bigger in these pictures than they actually are. They are tiny, maybe three or four weeks old. I believe Dad is around somewhere too as a couple of nights ago I saw the cats all lined up staring at something in the garden. Turns out they were watching Momma Possum and big Daddy Possum getting all romantic right in the middle of our garden!!!
I hate to end this post on a sad note but I recieved a call this morning from a very dear friend of mine. Her child has relapsed. I will write more in the coming days and ask that you all do whatever you can to give this family your moral support. This family have been so kind to us and Scott is very fond of their precious little girl, Sierra. For everyone with a child who has leukemia relapse is the thing we dread more than anything else. Relapse indicates that the leukemia is stronger and more resistant than the therapy previously tried. Therefore the doctors must treat the relapse much more aggressively. Sierra had a relapse confirmed 2 days after her protocol ended, a time of great excitement yet a dangerous time, a window of opportunity for any remaining cells. I dont want to say too much about this child, sometimes writing here of other children makes me feel like a little old lady passing on the latest gossip. I just hope that you all know that this is not my intent. I write of these children only because I care and because of the great bonds forged during our crossed paths on this terrible journey.
David is still running a fever and is in a lot of pain. He did see the doctor yesterday and it seems he has a very nasty sinus infection. The antibiotics havent kicked in yet and he is having trouble with headaches and his vision. Hopefully in a day or so he'll be on the mend.
Derry is doing fine, still struggling with school but happy all the same. He is off out at hockey practice right now and I have to say a huge thank you to my friend Stephanie for making sure he got there today and keeping an eye on him. She has been an angel for us throughout all this and we are very grateful. Stephanie also homeschools her three boys and mentioned to me today about some outings for homeschooled kids on the horizon. I would definately like to be part of this and get Scott out and about a bit more often and meeting new children.
Speaking of Scotty, here he is with Jingle...


It also seems we have acquired some furry little squatters. Derry was cutting the grass earlier and came upon a big momma possum ....

He shrieked like a little girl, apparently it 'growled' at him, and ran inside. So I went out with an apple and guess what we found....


They look bigger in these pictures than they actually are. They are tiny, maybe three or four weeks old. I believe Dad is around somewhere too as a couple of nights ago I saw the cats all lined up staring at something in the garden. Turns out they were watching Momma Possum and big Daddy Possum getting all romantic right in the middle of our garden!!!
I hate to end this post on a sad note but I recieved a call this morning from a very dear friend of mine. Her child has relapsed. I will write more in the coming days and ask that you all do whatever you can to give this family your moral support. This family have been so kind to us and Scott is very fond of their precious little girl, Sierra. For everyone with a child who has leukemia relapse is the thing we dread more than anything else. Relapse indicates that the leukemia is stronger and more resistant than the therapy previously tried. Therefore the doctors must treat the relapse much more aggressively. Sierra had a relapse confirmed 2 days after her protocol ended, a time of great excitement yet a dangerous time, a window of opportunity for any remaining cells. I dont want to say too much about this child, sometimes writing here of other children makes me feel like a little old lady passing on the latest gossip. I just hope that you all know that this is not my intent. I write of these children only because I care and because of the great bonds forged during our crossed paths on this terrible journey.
Thursday, March 27, 2008
Clinic went well this morning and Scott had an anc of almost 5000 (due to the steroids) which is great but will obviously drop considerably in the coming days. I talked for a while with the doctor as it is becoming apparent that with each new round of vincristine the pain gets worse and lasts for longer. She said that they do see this with some of the children, whilst in others the pain lessens each time. She has recommended Glutamic acid which has recently been trialed by the Children's Oncology Group and has been shown to ease vincristine pain. Also recommended and prescibed was Paxil!! Scott definately needs something to ease his depression and anxiety and I was very keen to give it a go unti I read up about it. I'm already a basket case, and whilst Im sure this drug is a blessing to many, many people, I dont think I am comfortable giving him something which says in big bold letters, 'children who take this medicine may be at an increased risk of having suicidal thoughts or actions'.
On to David. He woke with a temperature of 100.4 but said he was well enough to drop us at clinic and go to work for a while. He seemed okay this afternoon, not his usual chirpy self by any means but certainly not in the zombie state he was in last night. He yelled at the TV a bit , ate pizza, played his favourite playstation game a while and all seemed hunky dory. Then about an hour ago he started shaking and shivering and saying he hurts all over. He's now in bed covered in a hundred blankets making a strange sort of wheezing sound. His temperature is 99.4 but he's definately coming down with a cold or flu or something. Grandmomma, Papa and Carolyn ... I promise you I am taking good care of him. Were he to get up and walk right now he would sound like a box of tic tacs on legs with a mild case of vitamin C poisoning.
Thanks for checking in us. Goodnight.
On to David. He woke with a temperature of 100.4 but said he was well enough to drop us at clinic and go to work for a while. He seemed okay this afternoon, not his usual chirpy self by any means but certainly not in the zombie state he was in last night. He yelled at the TV a bit , ate pizza, played his favourite playstation game a while and all seemed hunky dory. Then about an hour ago he started shaking and shivering and saying he hurts all over. He's now in bed covered in a hundred blankets making a strange sort of wheezing sound. His temperature is 99.4 but he's definately coming down with a cold or flu or something. Grandmomma, Papa and Carolyn ... I promise you I am taking good care of him. Were he to get up and walk right now he would sound like a box of tic tacs on legs with a mild case of vitamin C poisoning.
Thanks for checking in us. Goodnight.
Wednesday, March 26, 2008
Fever!
Poor David is in bed with a fever of 100.9 and feels like death warmed up. He says his whole body hurts and thought he was having a heart attack earlier at work. I felt like that last night but thought maybe I just needed to burp real bad. I still feel like I'm being squeezed but think its just stress - for me at least.
Needless to say we have gone into overdrive with the hand sanitizer and clorox. Scott's body will hit nadir in a day or two and his immune system will be screwed.
I gave David some Emergen-C and then went to make him my super-duper elixir - mango juice, soy protein, organic yoghurt, blackberries, blueberries and some green 'stuff'. I think he must have heard the blender because when I went back he was pretending to be asleep. :(
David tries to carry the world on his shoulders, sooner or later, it just gets too heavy. He needs a rest that's for sure.
Needless to say we have gone into overdrive with the hand sanitizer and clorox. Scott's body will hit nadir in a day or two and his immune system will be screwed.
I gave David some Emergen-C and then went to make him my super-duper elixir - mango juice, soy protein, organic yoghurt, blackberries, blueberries and some green 'stuff'. I think he must have heard the blender because when I went back he was pretending to be asleep. :(
David tries to carry the world on his shoulders, sooner or later, it just gets too heavy. He needs a rest that's for sure.
Tuesday, March 25, 2008
A Punching Bag
The title of this post has dual meaning. It is both what I probably need and what we feel like right now. Two of the latest blows make it so. Be forewarned, this is a rant just like Stephanie's earlier post today.
First blow - our Government.
While filing out the old taxes this past weekend (online, it's easy and my bank makes it cheap), a window pops up and says "About that tax rebate: You will not qualify because you used an invalid SSN for Stephanie". Keep in mind Stephanie and the boys use "ITIN's" from the IRS. The ONLY use an ITIN serves is for TAX purposes. However, in Washington's brilliance, the "tax refund" bill (passed just in early February) is written in a way that say folks using ITIN's are NOT allowed the rebate. Even if filing jointly with a natural-born citizen. It isn't that we just don't receive the rebate which would be calculated including them, the rebate for a single US citizen (me) is ineligible for me to receive.
All because they use numbers only given out by the IRS only. Which are used only for tax purposes. Not to mention, the boys can't procure SSN's until they are working age (Immigration Law). We are going to spend a morning at the local SSN office to file for a number for Stephanie (which will change nothing as 1. she will no be working while Scott is in treatment and 2. it will only be used to put on a tax filing for the benefit of getting said rebate and 3. because due to her being a LEGAL immigrant, she can't receive any public assistance for 10 years). Will see how that goes.
Second blow - Insurance plan.
We've had a great insurance plan from work. So good in this type situation, I've been a huge proponent of encouraging people to do the math and switch if it makes sense. The plan had a sizable deductible ($4,000), but after that was met with hospital, doctor and pharmacy bills, everything was covered 100%. The maximum we'd spend any plan year was the 4k. Pretty clear cut and easy to plan for.
So I receive today our Open Enrollment letter. Same provider. Same plans options. Just one wee little addition this year - "We will be introducing prescriptions co-payments AFTER the deductible is met on the high deductible plan". Great. This makes me see red. The one thing I could count on as not being a worry through the nightmare of having a child with cancer was our insurance, as I knew exactly what we would spend, planned for it, and forgot about it.
Now, with this in place, there is no absolute out of pocket maximum. We have no idea what drugs Scott will need (we know the ones in the protocol). What if we had to pay for all those nasty Luvenox shots last September? So there is no way to plan and forget what expenses will be faced, as there is no maximum. This additional cost could easily be as much as the deductible again. We're always at the pharmacy for something or another.
So we all feel like we want to beat the hell out of a wall or something.
At the same time, we all feel like we've had the hell beat out of us.
In no way will we let Scott go without anything he needs in this fight, that is not the issue. It is just a frustration very similar to what Stephanie wrote about earlier - this mess is ugly regardless of what facet you view. It just doesn't get the coverage or interest that Lance Armstrong on a bike of Susan G. Komen's pink ribbons do. It doesn't because millions of women face breasts cancer. Millions of men face prostate and other cancers. But only a few in a million are kids that are diagnosed with cancer.
And most of the cries to help the few go unheard.
In summary, Dubya (the rebate was his idea, and he hates all immigrants it seems, and especially makes the LEGAL ones suffer while doing nothing to stop the illegals), Congress (for writing such drivel and not funding ped onc research) and UnitedHealthcare (for killing the spirit of high deductible plans - one of the best ideas in healthcare in decades) can just all go straight to bloody hell.
Have a nice day.
First blow - our Government.
While filing out the old taxes this past weekend (online, it's easy and my bank makes it cheap), a window pops up and says "About that tax rebate: You will not qualify because you used an invalid SSN for Stephanie". Keep in mind Stephanie and the boys use "ITIN's" from the IRS. The ONLY use an ITIN serves is for TAX purposes. However, in Washington's brilliance, the "tax refund" bill (passed just in early February) is written in a way that say folks using ITIN's are NOT allowed the rebate. Even if filing jointly with a natural-born citizen. It isn't that we just don't receive the rebate which would be calculated including them, the rebate for a single US citizen (me) is ineligible for me to receive.
All because they use numbers only given out by the IRS only. Which are used only for tax purposes. Not to mention, the boys can't procure SSN's until they are working age (Immigration Law). We are going to spend a morning at the local SSN office to file for a number for Stephanie (which will change nothing as 1. she will no be working while Scott is in treatment and 2. it will only be used to put on a tax filing for the benefit of getting said rebate and 3. because due to her being a LEGAL immigrant, she can't receive any public assistance for 10 years). Will see how that goes.
Second blow - Insurance plan.
We've had a great insurance plan from work. So good in this type situation, I've been a huge proponent of encouraging people to do the math and switch if it makes sense. The plan had a sizable deductible ($4,000), but after that was met with hospital, doctor and pharmacy bills, everything was covered 100%. The maximum we'd spend any plan year was the 4k. Pretty clear cut and easy to plan for.
So I receive today our Open Enrollment letter. Same provider. Same plans options. Just one wee little addition this year - "We will be introducing prescriptions co-payments AFTER the deductible is met on the high deductible plan". Great. This makes me see red. The one thing I could count on as not being a worry through the nightmare of having a child with cancer was our insurance, as I knew exactly what we would spend, planned for it, and forgot about it.
Now, with this in place, there is no absolute out of pocket maximum. We have no idea what drugs Scott will need (we know the ones in the protocol). What if we had to pay for all those nasty Luvenox shots last September? So there is no way to plan and forget what expenses will be faced, as there is no maximum. This additional cost could easily be as much as the deductible again. We're always at the pharmacy for something or another.
So we all feel like we want to beat the hell out of a wall or something.
At the same time, we all feel like we've had the hell beat out of us.
In no way will we let Scott go without anything he needs in this fight, that is not the issue. It is just a frustration very similar to what Stephanie wrote about earlier - this mess is ugly regardless of what facet you view. It just doesn't get the coverage or interest that Lance Armstrong on a bike of Susan G. Komen's pink ribbons do. It doesn't because millions of women face breasts cancer. Millions of men face prostate and other cancers. But only a few in a million are kids that are diagnosed with cancer.
And most of the cries to help the few go unheard.
In summary, Dubya (the rebate was his idea, and he hates all immigrants it seems, and especially makes the LEGAL ones suffer while doing nothing to stop the illegals), Congress (for writing such drivel and not funding ped onc research) and UnitedHealthcare (for killing the spirit of high deductible plans - one of the best ideas in healthcare in decades) can just all go straight to bloody hell.
Have a nice day.
Paging Bob Geldof
As time goes by it seems the angrier I become. I do not believe David and I were chosen to parent a child with cancer because “we are strong enough to deal with it”, nor do I believe that the children who die from cancer are any more special than any other child on Earth or that they have been called home to god. I am sick of reading these hogwash supposedly comforting words. I am also fed up with the truth of this horrific disease not being exposed. Whilst the image of the happy bald child playing in the sun may be more pleasing to the eye than a child throwing up so aggressively that he or she shit themselves, the nasty and cruel reality should be out there. I would love to run a PETA style advertising campaign, in your face, this is what cancer does, and it is NOT about cute bald kids and their bravery. Bravery does not beat cancer neither do smiles. Neither does prayer. They may help the individual I am sure but at the end of the day have no bearing on the end result. The only chance at a better cure rate is more money. And to be perfectly honest were I to see a cute and fluffy seal cub being clubbed to death or a happy bald kid, guess where my money would go? I know that prior to Scott’s diagnosis I had absolutely no idea what childhood cancer entailed or to the extent of those diagnosed. I am sure that I must have seen campaigns for pediatric cancer to raise awareness but cannot recall a single image or slogan yet certain images, such as Romanian orphanages, fluffy dead seal cubs or AIDS victims, will stay with me for life. Pediatric cancer is very, very ugly and can take many years to overcome or to die from. I would love to take your hand and show you around our oncology unit, and whilst there may be hope and smiles there is also an untold story of pain, worry and immense suffering.
Monday, March 24, 2008
Driving for Donors
Please view the video above about Pat Padraja and his Driving For Donors program. Pat and his parents have asked us to help with this year's drive, so please help us help them! I know most of the folks that come here regularly will help in any way possible, but we need to spread the word as far and as wide as possible. So if you have an email list, please contact your friends and family and give them this link:
http://apps.facebook.com/help_pat/facebook_apps/ad_landing?campaign=442&source=email
Any help in any way will be greatly appreciated by Pat and everyone at Driving for Donors. But even more importantly, each person that finds a marrow match from the people signed up by Pat's effort will have another chance at living.
And I can guarantee you they will be even more appreciative.
Pat's mom sums up their need by in the message she sent us:
Can you help us with this year’s drive? We are having a hard time fundraising this year and I am beginning to panic a bit. We need to raise $35,000 more for the US portion of the drive that the RV will leave for in early May, not to mention another $100,000 for the international portion of the drive to the countries that are desperate for Pat’s help!
So please, spread the word far and wide. Thanks!
http://apps.facebook.com/help_pat/facebook_apps/ad_landing?campaign=442&source=email
Any help in any way will be greatly appreciated by Pat and everyone at Driving for Donors. But even more importantly, each person that finds a marrow match from the people signed up by Pat's effort will have another chance at living.
And I can guarantee you they will be even more appreciative.
Pat's mom sums up their need by in the message she sent us:
Can you help us with this year’s drive? We are having a hard time fundraising this year and I am beginning to panic a bit. We need to raise $35,000 more for the US portion of the drive that the RV will leave for in early May, not to mention another $100,000 for the international portion of the drive to the countries that are desperate for Pat’s help!
So please, spread the word far and wide. Thanks!
Sunday, March 23, 2008
Saturday, March 22, 2008
Joanne Lee
A friend, fellow cancer mum from St Joes and a heck of a brave lady. Look what she did today to raise money and awareness for St. Baldricks and pediatric cancer......
before ...

before ...
and after...

Doesnt she look beautiful!!
For more photos and updates on her little girl, Samantha, please visit her caringbridge page...
Maybe its not just leukemia that's in the blood
Hey, now boys there’s something not right
Did anyone see Willie at the dance last night
Let’s pick up Boa without a fuss
Chuck him in with caimans at the back of the bus
‘Cause we’re running late, it’s way past ten
We’re driving through the straths and glens
Come on, Johnny Bulla, make it fast
For the 12 noon throw-up
And the clash of the ash
Well we’d better make change now it seems
Geek to the centre, Weed to the wing
The Rocket’s old and slow and due to retire
Stick him right on the sawdust ready to fire
But if we do all that and there’s no-one spare
Tell me who’s gonna mark the Kinlochsheil Bear
He’s hard as nails, quick as a flash
He comes down from the caves
For the clash of the ash
This story started long ago
With heroes forged and legends told
And for every fighting highland man
Stand by your brother, die for the clan
But when the whistle blows and the battle’s done
These shinty boys shine like the sun
We don’t play for fame, we don’t play for cash
We just play for the glory
And the clash of the ash
Derry is playing (and Annie watching) soon. Scott feels like he's been dragged through a hedge backwards so it doesnt look like we'll be there to cheer him on. Good Luck Dezzy!!
Did anyone see Willie at the dance last night
Let’s pick up Boa without a fuss
Chuck him in with caimans at the back of the bus
‘Cause we’re running late, it’s way past ten
We’re driving through the straths and glens
Come on, Johnny Bulla, make it fast
For the 12 noon throw-up
And the clash of the ash
Well we’d better make change now it seems
Geek to the centre, Weed to the wing
The Rocket’s old and slow and due to retire
Stick him right on the sawdust ready to fire
But if we do all that and there’s no-one spare
Tell me who’s gonna mark the Kinlochsheil Bear
He’s hard as nails, quick as a flash
He comes down from the caves
For the clash of the ash
This story started long ago
With heroes forged and legends told
And for every fighting highland man
Stand by your brother, die for the clan
But when the whistle blows and the battle’s done
These shinty boys shine like the sun
We don’t play for fame, we don’t play for cash
We just play for the glory
And the clash of the ash
Derry is playing (and Annie watching) soon. Scott feels like he's been dragged through a hedge backwards so it doesnt look like we'll be there to cheer him on. Good Luck Dezzy!!
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