Stephanie is suffering from a very painful back and neck and basically most things from the waist up for the last couple of days. So we're a bit late on a clinic update for the week. Scott's counts were above the mandated level and he received his methatrexate yesterday. That's all he has this week. Except he's gotten a sore neck today it appears. Have to keep an eye on those two for sure.
Scott has become a swimming monster. Even yesterday after he got home from clinic he hopped in the pool - 3 times. He just swims end to end continuosly. We aren't sure how he does it, because he just seems as if it is an obsession. This has made him much more active than anytime previous in his treatment. Which is good! It helps his body recover faster, making that marrow work in high gear. Last night he seemed in a bit of a mood and headed out to the pool instead of a bedroom. We went out and watched him splash from end to end dozens of times and I asked him if it made him feel better. His answer was "No. It helps with stress though". Being just about 12 and having to know how to handle stress is just wrong.
National Flip Flop Day
Click that link there and you'll be off to the Nation Flip Flop Day website. This is a promotion done by Tropical Smoothie Cafe to benefit Camp Sunshine. Flip Flop day is June 21. The first 500 folks arriving in flip flops at all Tropical Smoothie Cafe's that day will get a free 24-oz Jetty Punch (strawberry/banana) smoothie. Camp Sunshine in Casco, Maine just happens to be where we're off to in a few weeks. Tropical Smoothie Cafe is a big part of that, as they have entered into a national partnership with Camp Sunshine, and the Brandon location is actually sponsoring our trip to the camp. This is something we simply could not be able to do without their generous help and involvement. So I shall shamelessly encourage you to stop by the closest location and enjoy a REAL fruit smoothie - not some of those contrived things from concentrate at most smoothie shops.
Off we go to Derry's first weekend since school ended. He got out after a half-day on Wednesday and had Scott completely tired of his existence about an hour after he got home. Should be a lovely, long summer!
Scott & Sunny
Friday, June 6, 2008
Tuesday, June 3, 2008
Just another day and a bit and it will be Thursday again. Oh joy! God I hate Thursdays.
Scott is feeling pretty good. He’s starting to venture out a little more often into the pool and manages to swim a little further every day. It has been up into the mid 90’s here … crazy hot … 7th circle of hell hot. The only problem is the water is making him very itchy and very tired. I just hope that it IS the exercise and nothing more that is tiring him out. He is also starting to get a little colour on his skin and his hair is almost down to the bottom of his neck. It’s a bloody mess but he will not let us have it cut. Well he will, but there are conditions. Either highlights or green tips!! I called a couple of hair salons and got the response I was expecting, bleaching or colouring are NOT a good idea whilst there is chemo in his hair. He also wants his eyebrow pierced. We did ask the lovely Dr Rossbach last week and he said ‘sure, but make sure your counts are good’, but we weren’t sure if he was joking or not. He has a very wry sense of humour!! Anyhow as cool as I think he would look with green hair and a pierced eyebrow I think he’s going to have to wait a couple of years and just go with whatever mutilation is the current trend.
I managed to quit for 23 hours and as soon as I was out of the house smoked four in a row. I am such a loser. Since then I am managing on 5 a day but I’m compensating by still chugging down the spirulina slime and other natural goodies. David and Derry are still geeks and escape to their fantastical and virtual worlds each night. Scott and I have renamed them Sitting Down and Talking Bollocks – traditional Native American names (perhaps?) and well deserved.
That’s about it. Please wish us well for Thursday, I am a basket case and every week it gets harder and harder. We have lost too many children recently and so many are struggling. This is a living nightmare, it really is. I miss the children who didnt make it very much and I am so scared.
Take care and thanks for checking in.
Scott is feeling pretty good. He’s starting to venture out a little more often into the pool and manages to swim a little further every day. It has been up into the mid 90’s here … crazy hot … 7th circle of hell hot. The only problem is the water is making him very itchy and very tired. I just hope that it IS the exercise and nothing more that is tiring him out. He is also starting to get a little colour on his skin and his hair is almost down to the bottom of his neck. It’s a bloody mess but he will not let us have it cut. Well he will, but there are conditions. Either highlights or green tips!! I called a couple of hair salons and got the response I was expecting, bleaching or colouring are NOT a good idea whilst there is chemo in his hair. He also wants his eyebrow pierced. We did ask the lovely Dr Rossbach last week and he said ‘sure, but make sure your counts are good’, but we weren’t sure if he was joking or not. He has a very wry sense of humour!! Anyhow as cool as I think he would look with green hair and a pierced eyebrow I think he’s going to have to wait a couple of years and just go with whatever mutilation is the current trend.
I managed to quit for 23 hours and as soon as I was out of the house smoked four in a row. I am such a loser. Since then I am managing on 5 a day but I’m compensating by still chugging down the spirulina slime and other natural goodies. David and Derry are still geeks and escape to their fantastical and virtual worlds each night. Scott and I have renamed them Sitting Down and Talking Bollocks – traditional Native American names (perhaps?) and well deserved.
That’s about it. Please wish us well for Thursday, I am a basket case and every week it gets harder and harder. We have lost too many children recently and so many are struggling. This is a living nightmare, it really is. I miss the children who didnt make it very much and I am so scared.
Take care and thanks for checking in.
Friday, May 30, 2008
Thursday, May 29, 2008
the spiderman is always hungry...
Another Thursday another shot of the good stuff for Scotty boy.
Counts were elevated due to the steroids although his monocytes were low which spooked me somewhat but our lovely nurse, Vicky, calmed me down and said all looked good.
I think as the weeks tick by I get more and more nervous. Relapse is often seen early in t-cell (median relapse time is 62 weeks as oppose to about 130 weeks with pre b-cell) but that still leaves the other 50% occurring after 62 weeks. I think I have said this before but the word ‘cured’ isn’t uttered until 10 years remission. 10 years!!!
We got home at a decent time this morning and I spent hours going through all his bloodwork since diagnosis, driving myself crazy over counts from months ago. It was shocking looking back and seeing how many 'abnormal' cells Scott has had over the last 16 months, what they could have implied and how ignorant I was. By the time David got home from work I was hyperventilating and ready for Bedlam.
That’s all for now, apart from …
1. I stopped smoking today ….. ahahahhahahaha … I want to kill someone already and its only been 4 hours!!
2. We are going to cancer camp in Maine!!
3. 13 days until The Cure!!
Counts were elevated due to the steroids although his monocytes were low which spooked me somewhat but our lovely nurse, Vicky, calmed me down and said all looked good.
I think as the weeks tick by I get more and more nervous. Relapse is often seen early in t-cell (median relapse time is 62 weeks as oppose to about 130 weeks with pre b-cell) but that still leaves the other 50% occurring after 62 weeks. I think I have said this before but the word ‘cured’ isn’t uttered until 10 years remission. 10 years!!!
We got home at a decent time this morning and I spent hours going through all his bloodwork since diagnosis, driving myself crazy over counts from months ago. It was shocking looking back and seeing how many 'abnormal' cells Scott has had over the last 16 months, what they could have implied and how ignorant I was. By the time David got home from work I was hyperventilating and ready for Bedlam.
That’s all for now, apart from …
1. I stopped smoking today ….. ahahahhahahaha … I want to kill someone already and its only been 4 hours!!
2. We are going to cancer camp in Maine!!
3. 13 days until The Cure!!
Saturday, May 24, 2008
Insomnia again. At least on a night like this I can chuck down an Ambien and droll all over the pillow for several hours. Scott is on his emotional roller coaster now. Upbeat and chatty one minute. Glaring and growling 15 minutes later. Steroids suck.
It was hockey day for Derry today. His team has come a long way in the last month compared to how they were playing earlier in the spring season. They only tied, but now have been a month without losing a game. A small miracle indeed. Derry gets better each week, and when his muscle structure finally catches up to his size, he should be in rather good shape.
Stephanie has went to sleep. But she mentioned something yesterday that has me thinking tonight. She was talking about Memorial Day, and what folks "usually" do. She said - "I didn't know we were supposed to go away on Memorial Day". At the time it struck me as just one of those cultural anomalies we have at times because of where we are both from. But its been grinding in my head this evening. Yes, lots of folks "go away" on this weekend. But we don't. Not just this weekend, no weekend. We are in the unenviable position of simply not being able to plan anything that is more than a trip out for a couple of hours, planned at the last moment. Far too many things have gotten cancelled after we've planned them. Nothing of great magnitude mind you, but it is just the way we must be at this time.
We live a far from normal life these days. One of the hardest things ever asked to any of us is "what are y'all doing" or "what did y'all do this weekend". It's just a simple, almost rhetorical question that most folks ask just about anyone, but it just unnerves me these days for some reason. I feel we're short-changing the boys by not doing things on the weekend. Not going to a movie or game or beach or something away from the house. I know that is probably a silly thought, but it hurts to think how this bastard of a disease controls so many aspects of every part of our family. Stephanie can't watch Derry play hockey most weekends because of the side effects Scott is experiencing or if his counts are bottomed out. That eliminates 2 out of every 3 weekends right there due to his treatment cycle.
Don't get me wrong, it's not as if we were the kingpins of the social circuit prior to all of this. The frustration isn't the lack of "doing", it is really the "control" that this disease wields.
I know I seem to ramble these days when I write on here, but I do it off the top of my head and if it seems the cheese has slid completely off my cracker.....well.......maybe it has. Maybe it hasn't. But it is simply maddening to watch this happen to your kid. It's maddening to watch kids not make it. It's maddening to see what it does to one's wife, and all the other parents and all the families.
It is truly a lion that walks in your home and does as it damn well pleases, with absolutely no means of control to make it leave.
Off to Ambien Land....
It was hockey day for Derry today. His team has come a long way in the last month compared to how they were playing earlier in the spring season. They only tied, but now have been a month without losing a game. A small miracle indeed. Derry gets better each week, and when his muscle structure finally catches up to his size, he should be in rather good shape.
Stephanie has went to sleep. But she mentioned something yesterday that has me thinking tonight. She was talking about Memorial Day, and what folks "usually" do. She said - "I didn't know we were supposed to go away on Memorial Day". At the time it struck me as just one of those cultural anomalies we have at times because of where we are both from. But its been grinding in my head this evening. Yes, lots of folks "go away" on this weekend. But we don't. Not just this weekend, no weekend. We are in the unenviable position of simply not being able to plan anything that is more than a trip out for a couple of hours, planned at the last moment. Far too many things have gotten cancelled after we've planned them. Nothing of great magnitude mind you, but it is just the way we must be at this time.
We live a far from normal life these days. One of the hardest things ever asked to any of us is "what are y'all doing" or "what did y'all do this weekend". It's just a simple, almost rhetorical question that most folks ask just about anyone, but it just unnerves me these days for some reason. I feel we're short-changing the boys by not doing things on the weekend. Not going to a movie or game or beach or something away from the house. I know that is probably a silly thought, but it hurts to think how this bastard of a disease controls so many aspects of every part of our family. Stephanie can't watch Derry play hockey most weekends because of the side effects Scott is experiencing or if his counts are bottomed out. That eliminates 2 out of every 3 weekends right there due to his treatment cycle.
Don't get me wrong, it's not as if we were the kingpins of the social circuit prior to all of this. The frustration isn't the lack of "doing", it is really the "control" that this disease wields.
I know I seem to ramble these days when I write on here, but I do it off the top of my head and if it seems the cheese has slid completely off my cracker.....well.......maybe it has. Maybe it hasn't. But it is simply maddening to watch this happen to your kid. It's maddening to watch kids not make it. It's maddening to see what it does to one's wife, and all the other parents and all the families.
It is truly a lion that walks in your home and does as it damn well pleases, with absolutely no means of control to make it leave.
Off to Ambien Land....
Thursday, May 22, 2008
Thursday rolled around once more and off to clinic we went. Counts came back at 1990; platelets 248 and biliruben was at 1.4 so that meant onwards with the full dose of poison and another week of loveliness. Scott had a feel up – I mean physical – from Dr Tebbi and apart from being told he was getting a “little chubby” all looked good. Scott handled being told he was a fat kid pretty well considering it is a pretty touchy subject. I on the other hand, didn’t need to hear it. Anyway, the least said about how I feel on this the better. Let’s move on….
Chemo was again ‘upped’ but only slightly. Like I have said before it will keep on increasing until the anc stays at a reasonably low (just above neutropenic) level. There is no point in giving chemo to a leukemia patient if the blood is allowed to flourish! Steroids start again today, 135mg prednisone daily for 5 days, which is a massive amount but also aids in fighting the cancer. The wonderful side effect of this is hunger, big hunger, which brings us all back in a nice circle to chubby little Scott and to how pissed off I am.
We discussed his depression and I agreed to carry on with the Paxil even though it doesn’t appear to be helping. But I’ll hang with it a little longer. I also asked to see if there was anything else we could try to help Scott with his pain, depression, anxiety and insomnia but Dr Tebbi wasn’t keen on putting him on any extra medication and to be quite honest I fully agree. As horrible as all this is I would rather avoid any more medication unless things reach boiling point. I guess I was just hoping for a magic pill to take all this away, just one little non-addictive, safe and organic, magic little pain relieving, sleep inducing, slimming, happy pill. But there isn’t one. Well nothing that’s legal anyway.
Dr Tebbi also diagnosed him with ‘foot drop’. I’m not exactly sure what this is and I will do my best not to research it online as I know whatever I read will send me into a frenzy, but as I understand it, it is caused by the vincristine and should go away once he is off treatment. I hadn’t noticed it before but Dr Tebbi had me lay my leg down next to Scott’s and you could see a very noticeable difference in the way we held our feet and ankles.
Anyway, apart from having cancer, being depressed, a little psychotic, oh and now anxious about the Mayan (12/21/12) prophecies (we watched that ridiculous documentary on the crystal skulls, biggest load of crypto anthropological/archaeological/mythological/New Age dross I have seen in a long time), Scott is very doing well.
He has spent a great deal of time lately in the pool and even Derry braved the icy water last night. I appealed to his vanity by telling him that the chlorine would dry up his zits and the sun would highlight his hair beautifully and before you could say ‘Ayai Napa’ he was out there soaking up the sun, laughing and playing with his brother. For a little while he even forgot about his alternate world, the World of Warcraft.
I think that with Scott being so sick for such a long time a gulf had developed between them. Derry retreated away from all that was bad in Scott’s world, I know he was and is deeply hurt by all that his brother is going through but finds it hard to deal with it. Scott backed away from Derry because he was angry, “why me, why not Derry, why is it always me that gets the shitty end of the stick?” Scott was the one with bad eyesight, Scott was the one who was attacked by the dog and of course poor old Scott then got cancer and had a stroke. I guess it’s perfectly understandable that he feels just a wee bit peeved.
Again this evening they played together in the pool, just like the good old days when they were best mates, mortal enemies and blood brothers, without a care in the world.
Later it all went pear shaped. Scott went downhill quickly, the pains have started and he is terribly, terribly upset. I ended up giving him Ativan but it didn’t even take the edge off. I lay with him a while and we talked about everything under the sun. I promised him a day in bed tomorrow, a day of movies and Yorkshire puddings and Angel Delight. All the while he just cried. I would too. Leukemia stinks.
Well David has just knocked back some sleeping pills and headed off to bed… to Scott’s bed … Scott is in our bed. I think this is kind of normal when a child has cancer, lots of bed hopping and pills. My goodness, you should see our kitchen lately, bottles of medicines, pills, chemo, alternative potions, amino acids, and eyes of newts and toes of frogs. And today my new wonder drug arrived – Spirulina – also known as pond scum. I have been trying so hard lately to eat well (hoping against hope my healthy new living will cancel out my little vice/s); I now live on flax cereal, soy protein, walnuts, almonds, oodles of fruit, yoghurt, milk and now my lovely tub of dried algae. I don’t know if any of you have tried this stuff before but it is gross. I made a smoothie of apples, kiwi, spinach, raspberries, blueberries and a scoop of spirulina. It looked like sewer run-off. Absolutely disgusting. However I did manage to drink it (with a straw, it helps bypass the taste buds) then had a Dove bar to take the taste away. I feel so pleased with myself. Then, after Scott calmed down, I went for a walk. It’s the only way I can breathe right. When you have a sick child it’s almost impossible to breathe, well for me anyway. So I had a little walk and I saw a bobcat!!!!! It was just sitting in the middle of the path and scared the living daylights out of me. It was awesome.
Before I go I would like to say thank you to Grandmomma and Papa for thinking of me and for their kindness on Mothers Day. Also thanks to Carolyn for the beautiful book and CD. To Laura and David, Scott’s chemo angels, a HUGE thank you for being such remarkable people and for helping Scott though his treatment. Your commitment, love and generosity is very much appreciated. Thank you.
Well that’s it, I’m off to bed. Thanks for checking in. Nanight!
Chemo was again ‘upped’ but only slightly. Like I have said before it will keep on increasing until the anc stays at a reasonably low (just above neutropenic) level. There is no point in giving chemo to a leukemia patient if the blood is allowed to flourish! Steroids start again today, 135mg prednisone daily for 5 days, which is a massive amount but also aids in fighting the cancer. The wonderful side effect of this is hunger, big hunger, which brings us all back in a nice circle to chubby little Scott and to how pissed off I am.
We discussed his depression and I agreed to carry on with the Paxil even though it doesn’t appear to be helping. But I’ll hang with it a little longer. I also asked to see if there was anything else we could try to help Scott with his pain, depression, anxiety and insomnia but Dr Tebbi wasn’t keen on putting him on any extra medication and to be quite honest I fully agree. As horrible as all this is I would rather avoid any more medication unless things reach boiling point. I guess I was just hoping for a magic pill to take all this away, just one little non-addictive, safe and organic, magic little pain relieving, sleep inducing, slimming, happy pill. But there isn’t one. Well nothing that’s legal anyway.
Dr Tebbi also diagnosed him with ‘foot drop’. I’m not exactly sure what this is and I will do my best not to research it online as I know whatever I read will send me into a frenzy, but as I understand it, it is caused by the vincristine and should go away once he is off treatment. I hadn’t noticed it before but Dr Tebbi had me lay my leg down next to Scott’s and you could see a very noticeable difference in the way we held our feet and ankles.
Anyway, apart from having cancer, being depressed, a little psychotic, oh and now anxious about the Mayan (12/21/12) prophecies (we watched that ridiculous documentary on the crystal skulls, biggest load of crypto anthropological/archaeological/mythological/New Age dross I have seen in a long time), Scott is very doing well.
He has spent a great deal of time lately in the pool and even Derry braved the icy water last night. I appealed to his vanity by telling him that the chlorine would dry up his zits and the sun would highlight his hair beautifully and before you could say ‘Ayai Napa’ he was out there soaking up the sun, laughing and playing with his brother. For a little while he even forgot about his alternate world, the World of Warcraft.
I think that with Scott being so sick for such a long time a gulf had developed between them. Derry retreated away from all that was bad in Scott’s world, I know he was and is deeply hurt by all that his brother is going through but finds it hard to deal with it. Scott backed away from Derry because he was angry, “why me, why not Derry, why is it always me that gets the shitty end of the stick?” Scott was the one with bad eyesight, Scott was the one who was attacked by the dog and of course poor old Scott then got cancer and had a stroke. I guess it’s perfectly understandable that he feels just a wee bit peeved.
Again this evening they played together in the pool, just like the good old days when they were best mates, mortal enemies and blood brothers, without a care in the world.
Later it all went pear shaped. Scott went downhill quickly, the pains have started and he is terribly, terribly upset. I ended up giving him Ativan but it didn’t even take the edge off. I lay with him a while and we talked about everything under the sun. I promised him a day in bed tomorrow, a day of movies and Yorkshire puddings and Angel Delight. All the while he just cried. I would too. Leukemia stinks.
Well David has just knocked back some sleeping pills and headed off to bed… to Scott’s bed … Scott is in our bed. I think this is kind of normal when a child has cancer, lots of bed hopping and pills. My goodness, you should see our kitchen lately, bottles of medicines, pills, chemo, alternative potions, amino acids, and eyes of newts and toes of frogs. And today my new wonder drug arrived – Spirulina – also known as pond scum. I have been trying so hard lately to eat well (hoping against hope my healthy new living will cancel out my little vice/s); I now live on flax cereal, soy protein, walnuts, almonds, oodles of fruit, yoghurt, milk and now my lovely tub of dried algae. I don’t know if any of you have tried this stuff before but it is gross. I made a smoothie of apples, kiwi, spinach, raspberries, blueberries and a scoop of spirulina. It looked like sewer run-off. Absolutely disgusting. However I did manage to drink it (with a straw, it helps bypass the taste buds) then had a Dove bar to take the taste away. I feel so pleased with myself. Then, after Scott calmed down, I went for a walk. It’s the only way I can breathe right. When you have a sick child it’s almost impossible to breathe, well for me anyway. So I had a little walk and I saw a bobcat!!!!! It was just sitting in the middle of the path and scared the living daylights out of me. It was awesome.
Before I go I would like to say thank you to Grandmomma and Papa for thinking of me and for their kindness on Mothers Day. Also thanks to Carolyn for the beautiful book and CD. To Laura and David, Scott’s chemo angels, a HUGE thank you for being such remarkable people and for helping Scott though his treatment. Your commitment, love and generosity is very much appreciated. Thank you.
Well that’s it, I’m off to bed. Thanks for checking in. Nanight!
Friday, May 16, 2008
Thursday, May 15, 2008
The sun is trying to kill me
Scott had clinic again today - surprise surprise - and thankfully (phew) his counts looked okay and he got a lovely syringe full of methotrexate. His anc was lower than it has been in quite a while but I hope this is simply due to chemo being increased. I think that the nurses are getting pissed off with me though as I have so many questions and concerns... "why is this elevated", "why are the lymphs low", "why...", "why ... ", why ..."???? I feel like I am going crazy, my head hurts, my chest hurts, is cancer eating away at me too? Most of all every time I look at Scott it hurts, I get angry, livid, terrified. This is all so unfair. Life can be such a bad word that I couldnt post here. But it is.
I am fed up with it all. I still havent told Scott about the two sweethearts we lost within days of each other. Just cant do it. He loved them both so much. It will break his heart. Today and last week I have avoided other people at clinic, worried that someone will say something and I will end up in tears and Scott will find out. David says it looks like I am being rude. Well so be it.
I dont feel great either, kind of like Ive been slapped in the face with a brick. Not only that but I have been sitting in the sunshine a bit over the last week and now I look like I have the plague. It itches so bad and Im all bumpy. We also found out this morning that 27 cars in our street alone got smashed into last night. Our cars were untouched, I guess even a burglar has standards. Oh and something suspicious happened next door also. I think its time to polish up my karate skills or buy a bloody great gun. I read the other day that taser parties are becoming all the rage, kind of like tupperware but different, if I had any friends I might have a party like that too.
Well thats it, Im fed up with this crap. There is so much I would like to say on here but I wont. Its kind of like being in a goldfish bowl and its unnerving. I can only go so far. If I really opened up my big gob and let it all spew out I am sure they'd cart me off in a straight jacket.
Or maybe not .... I am sane. Yet I am a minority.
I am fed up with it all. I still havent told Scott about the two sweethearts we lost within days of each other. Just cant do it. He loved them both so much. It will break his heart. Today and last week I have avoided other people at clinic, worried that someone will say something and I will end up in tears and Scott will find out. David says it looks like I am being rude. Well so be it.
I dont feel great either, kind of like Ive been slapped in the face with a brick. Not only that but I have been sitting in the sunshine a bit over the last week and now I look like I have the plague. It itches so bad and Im all bumpy. We also found out this morning that 27 cars in our street alone got smashed into last night. Our cars were untouched, I guess even a burglar has standards. Oh and something suspicious happened next door also. I think its time to polish up my karate skills or buy a bloody great gun. I read the other day that taser parties are becoming all the rage, kind of like tupperware but different, if I had any friends I might have a party like that too.
Well thats it, Im fed up with this crap. There is so much I would like to say on here but I wont. Its kind of like being in a goldfish bowl and its unnerving. I can only go so far. If I really opened up my big gob and let it all spew out I am sure they'd cart me off in a straight jacket.
Or maybe not .... I am sane. Yet I am a minority.
Tuesday, May 13, 2008
Stephanie and I sit shellshocked tonight. This morning little Kaylie passed away. She was only two. This is extremely disturbing news. Little Kaylie was in the hospital when Scott was diagnosed, and we met her, her mom Tisha and Kaylie's grandmom while they made literally thousands of laps around the ward at St. Joe's.
There are just no words right now. Three kids we know have been lost in less than 4 weeks. It is like some sort of unimaginable torture.
We will miss you greatly little Kaylie.
There are just no words right now. Three kids we know have been lost in less than 4 weeks. It is like some sort of unimaginable torture.
We will miss you greatly little Kaylie.
Sunday, May 11, 2008
Mum's Day
Boy does Mother's Day (it's today in the US, it was last month in the UK) take on new meaning these days. The "duties of a mother" change dramatically when one has a child battling cancer. The whole gig changes. As I watch Stephanie and the things she does, I often wonder how in the world she does the things she does continually with Scott. It takes a lot of patience and determination. She has to be very stern and methodical with all the medicines and cleanliness, all while continually realizing this is likely the most serious thing one can have to deal with in a lifetime.
I don't believe there are any "parenting" manuals that describe exactly how one deals with facing a child diagnosed with cancer. Most folks are probably too afraid to write one, and the parents that have been down this road simply don't have the time during the battle, and likely want to leave the demons behind after the war is waged.
But today is for Mom's. They deserve tons of credit and are probably grossly underappreciated 90% of the time. They have a tough job indeed. I think of Stephanie, my mom and Christine obviously. But I also can't help but think of some other mom's that are hurting. Mom's like Mary Lynn who just lost Sierra. Like Sherry Tucker who lost Zach, but now marches on with a vengence and legacy to little Zach. Like Tisha, little Kaylie's mom that has sat in ICU over 3 months now, along with HER mom as well.
All superstar mom's indeed.
I don't believe there are any "parenting" manuals that describe exactly how one deals with facing a child diagnosed with cancer. Most folks are probably too afraid to write one, and the parents that have been down this road simply don't have the time during the battle, and likely want to leave the demons behind after the war is waged.
But today is for Mom's. They deserve tons of credit and are probably grossly underappreciated 90% of the time. They have a tough job indeed. I think of Stephanie, my mom and Christine obviously. But I also can't help but think of some other mom's that are hurting. Mom's like Mary Lynn who just lost Sierra. Like Sherry Tucker who lost Zach, but now marches on with a vengence and legacy to little Zach. Like Tisha, little Kaylie's mom that has sat in ICU over 3 months now, along with HER mom as well.
All superstar mom's indeed.
Thursday, May 8, 2008
Wednesday, May 7, 2008
Just thoughts
Far too many times I stay awake way too late on "pre-clinic" night. It just seems odd having a day of the week with such a name. One of those words/phrases that we never knew 16 months ago. But realizing the only thing "certain" in this epic is uncertainty - the mind wanders. Each week is a new set of bloodwork. Will it be good? Or will something be out of whack?
I know tons of folks say "you just have to be positive". We do stay as positive as possible, but the fear and nerves don't listen to such things when logic dictates positive things just are not certain. We can see it in Scott's eyes each Thursday. He has ativan on Wednesday nights, or he just can not go to sleep. He becomes guarded after dinner on Wednesday's.
Thursday. Just one of the seven days of the week. I don't think we'll ever be capable of mentally considering Thursday just one of the weekdays again. It is like this monolith on the calendar each week. If all is well, it can be a week until the next Thursday that has us feel.....well.......not exactly great, but the intake of seditives lessens.
At Scott's diagnosis, everything was beyond overwhelming. Beyond reasoning logic into how we would deal with such devastating news. Now, over 15 months and countless sleepless nights and complications, one still doesn't really know. Yes, we know the routine of drugs - as long as it is a routine cycle - but the best word I can use for it is the word "grind". Folks ask me all the time, "how are things?". I find I answer by saying "it's a grind. you just have to keep plowing". It's not a negative term, it just is that the worries and processes don't change. They grind along. Weeks with "perfect" bloodwork seem to fly. Weeks with some reading a bit off drag like crazy.
Then things happen with kids you know. Not from their website, but kids you see in the hospital. In the clinic. Kids that develop sets of complications which seem to spiral madly. And then you turn around and realize the kids are gone. They didn't make it. Then nothing seems certain. You question everything about where treatment is being done. It's not logical to question, it is just what your mind does.
Those thoughts are with me because virtually any cancer site you go to contains information about "survival rates". Once you have a child involved in this nightmare, those numbers mean squat. I'd wager a lot of money if you surveyed all the parents at clinic, they have the "50 percent" answer. Each child is going to get through this, or they are not. That sounds cold, but most "insiders" know it isn't. And some of the sites and even doctors state "oh, that survival rate is 90%".
Great.
Line up 100 kids in the hall, and look at 10 of them. 10 of them will be gone.
90% doesn't seem so dandy then.
Matthew and Sierra are gone. Their parents care nothing about that stupid survival rate. It's a meaningless number except for researchers. I don't begrudge them for working to better the number, I just wish the number wasn't such a huge "comfort" tool as it is made out to be by so many people.
Sorry to be such a downer, but that is the reality of this disease. It never lets you rest. You can't, or the lion in the house may awaken. You must continue to grind. Scott grinds. Stephanie grinds. I grind. Derry.....well......he grinds....he's just too cool to openly admit it.
I'm off to attempt sleep now. Tomorrow is Thursday. The nerves await. Sadly, Sierra has no "Thursday" tomorrow.
And that simply breaks my heart.
I know tons of folks say "you just have to be positive". We do stay as positive as possible, but the fear and nerves don't listen to such things when logic dictates positive things just are not certain. We can see it in Scott's eyes each Thursday. He has ativan on Wednesday nights, or he just can not go to sleep. He becomes guarded after dinner on Wednesday's.
Thursday. Just one of the seven days of the week. I don't think we'll ever be capable of mentally considering Thursday just one of the weekdays again. It is like this monolith on the calendar each week. If all is well, it can be a week until the next Thursday that has us feel.....well.......not exactly great, but the intake of seditives lessens.
At Scott's diagnosis, everything was beyond overwhelming. Beyond reasoning logic into how we would deal with such devastating news. Now, over 15 months and countless sleepless nights and complications, one still doesn't really know. Yes, we know the routine of drugs - as long as it is a routine cycle - but the best word I can use for it is the word "grind". Folks ask me all the time, "how are things?". I find I answer by saying "it's a grind. you just have to keep plowing". It's not a negative term, it just is that the worries and processes don't change. They grind along. Weeks with "perfect" bloodwork seem to fly. Weeks with some reading a bit off drag like crazy.
Then things happen with kids you know. Not from their website, but kids you see in the hospital. In the clinic. Kids that develop sets of complications which seem to spiral madly. And then you turn around and realize the kids are gone. They didn't make it. Then nothing seems certain. You question everything about where treatment is being done. It's not logical to question, it is just what your mind does.
Those thoughts are with me because virtually any cancer site you go to contains information about "survival rates". Once you have a child involved in this nightmare, those numbers mean squat. I'd wager a lot of money if you surveyed all the parents at clinic, they have the "50 percent" answer. Each child is going to get through this, or they are not. That sounds cold, but most "insiders" know it isn't. And some of the sites and even doctors state "oh, that survival rate is 90%".
Great.
Line up 100 kids in the hall, and look at 10 of them. 10 of them will be gone.
90% doesn't seem so dandy then.
Matthew and Sierra are gone. Their parents care nothing about that stupid survival rate. It's a meaningless number except for researchers. I don't begrudge them for working to better the number, I just wish the number wasn't such a huge "comfort" tool as it is made out to be by so many people.
Sorry to be such a downer, but that is the reality of this disease. It never lets you rest. You can't, or the lion in the house may awaken. You must continue to grind. Scott grinds. Stephanie grinds. I grind. Derry.....well......he grinds....he's just too cool to openly admit it.
I'm off to attempt sleep now. Tomorrow is Thursday. The nerves await. Sadly, Sierra has no "Thursday" tomorrow.
And that simply breaks my heart.
Tuesday, May 6, 2008
Our friend, Sandie, posted this elsewhere, at a site where many are following Scotty's progress. She posted it in memory of Mathew and Sierra. I know that many of the 'Cats who have been reading Skittles blog are feeling the pain too at losing two very special little children. I just thought I would put Sandie's beautiful dedication here also....
for all our babies in memory of Sierra and Matthew
I Hope You Dance
I hope you never lose your sense of wonder,
You get your fill to eat but always keep that hunger,
May you never take one single breath for granted,
GOD forbid love ever leave you empty handed,
I hope you still feel small when you stand beside the ocean,
Whenever one door closes I hope one more opens,
Promise me that you'll give faith a fighting chance,
And when you get the choice to sit it out or dance.
I hope you dance....I hope you dance.
I hope you never fear those mountains in the distance,
Never settle for the path of least resistance
Livin' might mean takin' chances but they're worth takin',
Lovin' might be a mistake but it's worth makin',
Don't let some hell bent heart leave you bitter,
When you come close to sellin' out reconsider,
Give the heavens above more than just a passing glance,
And when you get the choice to sit it out or dance.
I hope you dance....I hope you dance.
I hope you dance....I hope you dance.
(Time is a wheel in constant motion always rolling us along,
Tell me who wants to look back on their years and wonder where those years have gone.)
I hope you still feel small when you stand beside the ocean,
Whenever one door closes I hope one more opens,
Promise me that you'll give faith a fighting chance,
And when you get the choice to sit it out or dance.
Dance....I hope you dance.
I hope you dance....I hope you dance.
I hope you dance....I hope you dance..
(Time is a wheel in constant motion always rolling us along
Tell me who wants to look back on their years and wonder where those years have gone)
for all our babies in memory of Sierra and Matthew
I Hope You Dance
I hope you never lose your sense of wonder,
You get your fill to eat but always keep that hunger,
May you never take one single breath for granted,
GOD forbid love ever leave you empty handed,
I hope you still feel small when you stand beside the ocean,
Whenever one door closes I hope one more opens,
Promise me that you'll give faith a fighting chance,
And when you get the choice to sit it out or dance.
I hope you dance....I hope you dance.
I hope you never fear those mountains in the distance,
Never settle for the path of least resistance
Livin' might mean takin' chances but they're worth takin',
Lovin' might be a mistake but it's worth makin',
Don't let some hell bent heart leave you bitter,
When you come close to sellin' out reconsider,
Give the heavens above more than just a passing glance,
And when you get the choice to sit it out or dance.
I hope you dance....I hope you dance.
I hope you dance....I hope you dance.
(Time is a wheel in constant motion always rolling us along,
Tell me who wants to look back on their years and wonder where those years have gone.)
I hope you still feel small when you stand beside the ocean,
Whenever one door closes I hope one more opens,
Promise me that you'll give faith a fighting chance,
And when you get the choice to sit it out or dance.
Dance....I hope you dance.
I hope you dance....I hope you dance.
I hope you dance....I hope you dance..
(Time is a wheel in constant motion always rolling us along
Tell me who wants to look back on their years and wonder where those years have gone)
Sunday, May 4, 2008
Sierra
Yesterday our very good little friend Sierra died. I have so much I would like to say but am scared I dont say the right things. So forgive me if I get this wrong.
I havent told Scott yet. He is so unstable right now and I am terrified this is going to send him over the edge. He cared deeply about Sierra. I think she kinda liked him too, she called him 'Cott and always, even when she felt bad, gave him a smile. I have to tell him soon, I believe he may want to pay his respects, I cant not give him that opportunity to say 'goodbye'.
Sierra was beautiful and she always will be. She had the most incredible dark, and very wise, eyes. She had such a cheeky grin and, my goodness, she was the bendiest person I ever knew!! Sierra was adorable, with a fighting spirit, all wrapped up in a bundle of cuteness.
Today I have been 'acting', trying to make on its just a regular day. But it isnt. We lost Sierra. David went outside for a while on his own and trashed the weedeater, completely mangled it. We are angry, scared and very,very sad.
We are so sorry she is gone. For us, yes. But obviously we hurt for her Mom, her Dad and her brother and sister. I just hope they can find the strength to keep on going and someday to smile again.
This has been a horrible post to type.
Sierra, we'll miss you sunshine!
Added by David: Sierra was an aboslute gem. Just a little girl which always had the slyest smile I think I've ever seen. Sierra was also one of the first kids/families we met after Scott's diagnosis. She shared our clinic day, and one thing was certain - we'd see Sierra and her mom Mary Lynn at the clinic. I simply don't know what to think at times like these. I snapped while doing yard work like I've not snapped in a very, very long number of years. The anger I feel about this is great, and honestly, scares me. Sierra was just a child. I'd trade places with any of these kids in the blink of an eye. Sadly I can't do that.
Scott took well to her during this mess. I've also no idea how he'll handle this news. I have no idea if it is the right thing to do to have an 11-year-old boy deal with a funeral for a kid.
But all things in the nightmare seem to have no "right" answers. Just endless uncertainty, heartache and sadness.
Yes, she will be missed greatly.
Thursday, May 1, 2008
Today’s bloodwork looked fine so Scott started another cycle of bliss and merriment. Anc was 1800, platelets looking good at 270, biliruben high at 2. Had it been 2.1 he would have received only a half dose of the lovely vincristine. All chemo’s were increased today … again … he is now taking more than he has ever had to take, steroids also increased. Part of this is due to weight gain but mostly because his counts are remaining high, and hell no; we can’t have that, got to keep on hammering at his poor body and kill those suckers and everything else in its path!!
We are now home and Scott has dug himself into the floor, made a sort of nest next to his Playstation and ‘itchy and scratchy’ (David’s’ cat who we discovered HAS FLEAS!). He is bleating for Papa John’s pizza (which now makes the rest of us gag), and insists he is going to stay in his hole until the pain goes away … one week from now.
We are now home and Scott has dug himself into the floor, made a sort of nest next to his Playstation and ‘itchy and scratchy’ (David’s’ cat who we discovered HAS FLEAS!). He is bleating for Papa John’s pizza (which now makes the rest of us gag), and insists he is going to stay in his hole until the pain goes away … one week from now.
Sunday, April 27, 2008
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.
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.
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”…
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