...and another day with basically no answers. Scott had a chest xray, and nothing showed. Nothing growing in cultures yet. Nothing showing abonormal in blood. Scott with few symptoms other than a sore tummy, the fever and basically exhaustion. He's sleeping about 20 hours per day. Not eating much of anything. Not drinking much of anything.
Yet the fever persists. Tylenol drops it down for a bit, then it is right back up.
Tomorrow they are likely to switch the antibiotic from a broad-spectrum one to an antifungal antibiotic.
We're both wrecks. Scott is a mess. The "non-answers" just let endless thoughts run rampant in your head. Too many things.
It is Scott's "first" fever admission since diagnosis. Going almost 7 months without one shocks everyone we cross paths with at the clinic and hospital. But we've been diligent with what the docs told us. Prevention to the hilt. Yet there he stays in the hospital with a fever.
And no answers to this point. It is maddening enough to turn a normal person into a window-licker.
On the lighter side - we have to send a big Thank You to Susan, Steve and Taylor. They keep an eye on here and remembered Scott and Derry's birthday's. Susan came by the hospital today to see Scott and all of us. Taylor (her daughter) was due for a clinic visit today. Some of you may remember us posting about the night Scott was diagnosed along with two other kids, both teen girls. Taylor is one of those two. It was nice to hear from Susan that Taylor's treatment is complete (she was dx'd with Lymphoma) and she's started back to school this week with what Susan says is the consensus coolest hair in the school. It is great to get some good news about one of the kids at the hospital. That certainly doesn't seem to be the norm dealing with this beast.
Another shout out to our chemo angel Dave and his family. Scott had mail from him which brightened his day. I do have one question for Dave though -
Did you get the fish in the picture mounted?
That was about the only time Scott perked up today, except when Gracie (one of the treatment dogs) made a stop by his room this afternoon. Thanks a bunch folks. Please know it never fails to brighten his day.
Scott & Sunny
Tuesday, August 21, 2007
Monday, August 20, 2007
Monday evening
Scott's temperature just keeps bouncing all over. Last word from Stephanie was it was back up to 101.9. There is nothing good about that. It will make you climb the walls or either beat your head against it. Just no sure fire way to tell what in the world is causing it to jump around.
It is some type of infection, but what? Scott has no energy. None. Can barely sit up for more than a couple minutes. It is very troublesome and nerve-wracking.
Docs think he may have mono. Which just puts horrible thoughts through our head. Mono was one of the "it could be's" the night Scott got sick in January.
Just have to wait and watch. Which is damned painful. So far there is nothing positive in the cultures, but they are only 24 hours old now.
It's like being pulled around by some freak, sick puppetteer or something.
It is some type of infection, but what? Scott has no energy. None. Can barely sit up for more than a couple minutes. It is very troublesome and nerve-wracking.
Docs think he may have mono. Which just puts horrible thoughts through our head. Mono was one of the "it could be's" the night Scott got sick in January.
Just have to wait and watch. Which is damned painful. So far there is nothing positive in the cultures, but they are only 24 hours old now.
It's like being pulled around by some freak, sick puppetteer or something.
Reporting live on scene from room 237
New bloodwork has just come back and his counts have dropped quite substantially since Thursday and he needs a tranfusion pronto. This wont help with the fevers but it certainly should make him feel less washed out.
I worry 24/7 about the 'r' word and when I mentioned this to Dr. Tebbi earlier (before the counts came back) I saw in his eyes that he could see that possibility too. Or maybe that was just my paranoia. However I just had a bit of a chat with him and he said "capital N, capital O, capital T, Scotty is NOT relapsing, there are NO flimsy bad cells". He then showed me the new bloodwork and started talking about numbers I had never even noticed before, he said there were two indicators that Scott was not relapsing and that his bone marrow was working. I patted his knee and told him how lovely he was. He just laughed his cute little Iranian laugh. Is it normal to fall head over heels for your little boys oncologist?
He is to be tested for mono (glandular fever to y'all back home) as Dr Tebbi said it is rampant in Florida and this could explain Scotts lethargy.
His temperature went up to 101.7 during the night but he has been given tylenol and it is now 99.2. I hope it stays down but judging by the last few days it will bounce right back up again. The general purpose antibiotics are being continued until whatever is causing Scotts punyness is traced so they can give something more specific.
Well thats about it. I am still very worried but thankfully Dr Tebbi has stomped out my main fear.
Im off to make some coffee and since this place is like the Marie Celeste I'll get it all to myself!
Thanks for checking up on us and sorry I was such a wuss last night, but this really does suck.
I worry 24/7 about the 'r' word and when I mentioned this to Dr. Tebbi earlier (before the counts came back) I saw in his eyes that he could see that possibility too. Or maybe that was just my paranoia. However I just had a bit of a chat with him and he said "capital N, capital O, capital T, Scotty is NOT relapsing, there are NO flimsy bad cells". He then showed me the new bloodwork and started talking about numbers I had never even noticed before, he said there were two indicators that Scott was not relapsing and that his bone marrow was working. I patted his knee and told him how lovely he was. He just laughed his cute little Iranian laugh. Is it normal to fall head over heels for your little boys oncologist?
He is to be tested for mono (glandular fever to y'all back home) as Dr Tebbi said it is rampant in Florida and this could explain Scotts lethargy.
His temperature went up to 101.7 during the night but he has been given tylenol and it is now 99.2. I hope it stays down but judging by the last few days it will bounce right back up again. The general purpose antibiotics are being continued until whatever is causing Scotts punyness is traced so they can give something more specific.
Well thats about it. I am still very worried but thankfully Dr Tebbi has stomped out my main fear.
Im off to make some coffee and since this place is like the Marie Celeste I'll get it all to myself!
Thanks for checking up on us and sorry I was such a wuss last night, but this really does suck.
Sunday, August 19, 2007
I hate this shit.
Scott is fast asleep connected to his pole but no antibiotics yet (grrrrrrr!) and since Im not exactly known for my patience (its a good job Im not Dr Kildare then isnt it - Lorna may be the only one who has a clue what that means) I am on the verge of trotting off and boiling someones bunny.
He is too tired and that is what worries me, tired and no appetite or thirst. I am worried and I dont do stress well. My chest hurts and my head is thumping, it even hurts to look through my eyes.
His temperature has dropped so goodness knows what is going on. I am waiting for the bloodwork to come back, this will either send me into full scale meltdown or will bring a big stupid smile to my face. Scratch that, the nurse has just come in and told me it hasnt even been sent to the lab yet and it was drawn almost 2 hours ago. Blood cultures have been done but final results take 72 hours.
I also have an ache as this will be the first year I havent been able to see my beautiful son off for his first day back at school. It hurts a lot and I am very sorry Derry that I cant be there for you, I'll be thinking of you baby and cant wait to hear all about it and how much school sucks and how nerdy your teachers are and how David gave you a hard time and made you tuck your shirt in. Im sorry Derry, I love you so much and this is breaking my heart. But we'll be back home real soon.
Well thats all for now constant reader (channeling Steven King makes me feel important).
Goodnight.
He is too tired and that is what worries me, tired and no appetite or thirst. I am worried and I dont do stress well. My chest hurts and my head is thumping, it even hurts to look through my eyes.
His temperature has dropped so goodness knows what is going on. I am waiting for the bloodwork to come back, this will either send me into full scale meltdown or will bring a big stupid smile to my face. Scratch that, the nurse has just come in and told me it hasnt even been sent to the lab yet and it was drawn almost 2 hours ago. Blood cultures have been done but final results take 72 hours.
I also have an ache as this will be the first year I havent been able to see my beautiful son off for his first day back at school. It hurts a lot and I am very sorry Derry that I cant be there for you, I'll be thinking of you baby and cant wait to hear all about it and how much school sucks and how nerdy your teachers are and how David gave you a hard time and made you tuck your shirt in. Im sorry Derry, I love you so much and this is breaking my heart. But we'll be back home real soon.
Well thats all for now constant reader (channeling Steven King makes me feel important).
Goodnight.
The Fat Man Sang too quick.
Well, it seems the fat guy spoke too soon. Scott's fever returned today. Then late this afternoon spiked up to 100.7-101.1, depending on which thermometer we wanted to trust. A call to the hospital and Doc Wynn confirmed what we knew - bring him in right away.
So we're now here at St. Joe's with Scott checked in to room 237. He's not even accessed yet, but will be soon. After that will be some bloodwork and bacterial cultures. IV fluids and IV antibiotics.
Will post more when we know more. He'll be here at least 48 hours.
So we're now here at St. Joe's with Scott checked in to room 237. He's not even accessed yet, but will be soon. After that will be some bloodwork and bacterial cultures. IV fluids and IV antibiotics.
Will post more when we know more. He'll be here at least 48 hours.
Saturday, August 18, 2007
Shoppin and Skatin'
Scott felt a bit better again today, although he still says he has a "sore" stomach. It seems the fever worry has abated a bit today, and hopefully is gone. We did get him out today for about 5 hours. He went along to Derry's "assessment" skate and then we went on to the mall and Toys R Us for a bit of shopping. Scott needed some new shorts and knickers, as he's packed on a few pounds and was up to 92 Thursday at the clinic.
He is now exhausted and fallen asleep on the sofa. Just waiting until he has to be awaken for his 6mp. Hopefully he sleep sound tonight. It just seems something isn't "right" with him, like the cumulative effects are taking their toll on his body and the constant mental stress of worry if he's going to be sick or if we'll have to cart him off to the hospital - and if so, just what may be wrong. It is entirely too much for a kid to be asked to deal with emotionally.
Derry has his last "free" night tonight, as school starts back on Monday. He did quite well on his skate today. He's obviously improved his speed forward and backward since the spring skate. It will be the week after Labor Day before we know if he's slotted on a team this fall. Keeping our fingers crossed for that issue as well.
We are also hoping and crossing our fingers and toes for our little friend JJ. She's now across the Bay at All Children's Hospital in the preparation stage for her Stem Cell Transplant, which is due this coming Wednesday. We've come to know little JJ and her mom Marie quite well, as her diagnosis came along within days of Scott's. Transplant is a very scary ordeal, and we hope all goes well with her this coming week.
He is now exhausted and fallen asleep on the sofa. Just waiting until he has to be awaken for his 6mp. Hopefully he sleep sound tonight. It just seems something isn't "right" with him, like the cumulative effects are taking their toll on his body and the constant mental stress of worry if he's going to be sick or if we'll have to cart him off to the hospital - and if so, just what may be wrong. It is entirely too much for a kid to be asked to deal with emotionally.
Derry has his last "free" night tonight, as school starts back on Monday. He did quite well on his skate today. He's obviously improved his speed forward and backward since the spring skate. It will be the week after Labor Day before we know if he's slotted on a team this fall. Keeping our fingers crossed for that issue as well.
We are also hoping and crossing our fingers and toes for our little friend JJ. She's now across the Bay at All Children's Hospital in the preparation stage for her Stem Cell Transplant, which is due this coming Wednesday. We've come to know little JJ and her mom Marie quite well, as her diagnosis came along within days of Scott's. Transplant is a very scary ordeal, and we hope all goes well with her this coming week.
Friday, August 17, 2007
Riding The Low-grade wave
Scott is again riding the scary wave of a low-grade fever. It makes for a worrisome day (or days). Docs already called and the standard "if it reaches 100.5, you have to come in" rule stands (as always).
Trying to keep him drinking lots of fluids, as if he doesn't, he'll slightly dehydrate and temp will spike upward. So, the waiting game is on.
The waiting game is a large part of this whole process. Seem to be waiting for one thing or another most of the time. Just hoping not to have an admission on the last weekend before school starts.
Trying to keep him drinking lots of fluids, as if he doesn't, he'll slightly dehydrate and temp will spike upward. So, the waiting game is on.
The waiting game is a large part of this whole process. Seem to be waiting for one thing or another most of the time. Just hoping not to have an admission on the last weekend before school starts.
Thursday, August 16, 2007
To our multitude of UK readers (all 3 of you) ...
BBC4 at 8pm tonight, A Lion in the House -
'A LION IN THE HOUSE follows the stories of five exceptional children and their families as they battle pediatric cancer. From the trauma of diagnosis to the physical toll of treatment, this series documents the stresses that can tear a family apart as well as the courage of children facing the possibility of death with honesty, dignity and humor. As the film compresses six years into one narrative, it puts viewers in the shoes of parents, physicians, nurses, siblings, grandparents and social workers who struggle to defeat an indiscriminate and predatory disease. '
'A LION IN THE HOUSE follows the stories of five exceptional children and their families as they battle pediatric cancer. From the trauma of diagnosis to the physical toll of treatment, this series documents the stresses that can tear a family apart as well as the courage of children facing the possibility of death with honesty, dignity and humor. As the film compresses six years into one narrative, it puts viewers in the shoes of parents, physicians, nurses, siblings, grandparents and social workers who struggle to defeat an indiscriminate and predatory disease. '
Bloodwork and lights at ends of tunnels!
Scott had clinic this morning, just bloodwork no chemo. We were all basket cases for sure, worried sick about what the results would be, however everything looked fine, well fine for a cancer patient anyway!
wbc -> 3.1
hgb -> 8.8
plt -> 222
anc -> 1922
He did have a low grade fever which we'll be keeping an eye on, it was 99.6, if it goes above 100.4 he will have to be admitted for testing and a mandatory 48 hr stay.
Scott is still very lethergic and has a pain that 'migrates'.
I talked with Mr. Wallace this morning, Scotts lovely Guidance Teacher, and he is going to help us out with some books to use at home for the next couple of months, we then hope to ease Scott back into school sometime in early maintenance. So for the time being, like David said earlier, we will be homeschooling Scott but I most certainly am no teacher and neither do I particularly want to be. Scott is a kid and we want him around other kids, not stuck at home with his crazy old mother. But for now the time is not right.
Tomorrow, if Scott is up to it, we will go and visit his old school and meet the teachers who have been assigned to him. It will be a wonderful feeling and Im getting a bit weepy just thinking about it. Light at the end of the tunnel. Normal kid stuff on the horizon. YAY!!!!!
Before I go, thank you to everyone who signs our blog and thank you for all your messages of support. Thank you to our chemo angels, we are so pleased to have you onboard supporting Scott. Thank you to Scott's friend, Brandon, he is such a honey! Brandon comes around and plays with Scott like nothing has changed, most of Scotts other friends didnt stick around, but not Brandon. He's a true friend and a great kid.
Oh and Brandon, if you are reading this, which you're probably not, but your Mom and Dad might be, Scott has been given the okay to get back on his blades!!!! I am so excited about this. Maybe in a few days when he is feeling a bit more normal you guys can tear up the road a little, I even have some home made ramps!
from Hot Rod ...
"Did you reinforce the take-off ramp?"
"Nah, we didnt have time."
LOL
wbc -> 3.1
hgb -> 8.8
plt -> 222
anc -> 1922
He did have a low grade fever which we'll be keeping an eye on, it was 99.6, if it goes above 100.4 he will have to be admitted for testing and a mandatory 48 hr stay.
Scott is still very lethergic and has a pain that 'migrates'.
I talked with Mr. Wallace this morning, Scotts lovely Guidance Teacher, and he is going to help us out with some books to use at home for the next couple of months, we then hope to ease Scott back into school sometime in early maintenance. So for the time being, like David said earlier, we will be homeschooling Scott but I most certainly am no teacher and neither do I particularly want to be. Scott is a kid and we want him around other kids, not stuck at home with his crazy old mother. But for now the time is not right.
Tomorrow, if Scott is up to it, we will go and visit his old school and meet the teachers who have been assigned to him. It will be a wonderful feeling and Im getting a bit weepy just thinking about it. Light at the end of the tunnel. Normal kid stuff on the horizon. YAY!!!!!
Before I go, thank you to everyone who signs our blog and thank you for all your messages of support. Thank you to our chemo angels, we are so pleased to have you onboard supporting Scott. Thank you to Scott's friend, Brandon, he is such a honey! Brandon comes around and plays with Scott like nothing has changed, most of Scotts other friends didnt stick around, but not Brandon. He's a true friend and a great kid.
Oh and Brandon, if you are reading this, which you're probably not, but your Mom and Dad might be, Scott has been given the okay to get back on his blades!!!! I am so excited about this. Maybe in a few days when he is feeling a bit more normal you guys can tear up the road a little, I even have some home made ramps!
from Hot Rod ...
"Did you reinforce the take-off ramp?"
"Nah, we didnt have time."
LOL
Tuesday, August 14, 2007
Well it’s been two days since my last post and I wish I could be telling you all how much better Scott is feeling however he is still thoroughly exhausted, very quiet and just not himself at all. I am worried as usually by now (almost 6 days past chemo) he should be starting to show signs of recovery. There is not much more I can say about this without getting completely depressing, lets just hope tomorrow brings a better day.
Oh and also, some good news (YAY!), Derry was on the telly tonight! He has been at ‘extreme power skating’ camp the last 5 weeks being trained by this crazy French Canadian NHL referee named Jonny Murray. He is a real nice guy but kind of scary too. Having said that though he has been very sweet with Scott, he understands only too well what leukemia can do to a kid, Coach Jonny’s nephew also had ALL. He said that the next time we get Scott on the ice we have to call him and he will come and skate with him. So anyway, Bay News 9 was down at the rink today filming the kids and then they did an interview with Coach Jonny. This was all shown tonight and we saw Derry looking very cool speeding down the ice, looking uncannily like Wayne Gretsky it has to be said. I am so proud!
I would also like to take this opportunity to thank my good friend Stephanie Krupa for all her help. Without her Derry wouldnt have been able to do the hockey camp, what with me still not having a driving licence and Scott being ill, well it just wouldnt have been possible. Stephanie stepped in to help, she picks Derry up and takes him to the forum, she helps him with his skates and keeps an eye on him for me. Thank you Stephanie, we appreciate your support very much indeed.
And now for something completely different.
Here is Springsteen; intimidating the bin man….
Oh and also, some good news (YAY!), Derry was on the telly tonight! He has been at ‘extreme power skating’ camp the last 5 weeks being trained by this crazy French Canadian NHL referee named Jonny Murray. He is a real nice guy but kind of scary too. Having said that though he has been very sweet with Scott, he understands only too well what leukemia can do to a kid, Coach Jonny’s nephew also had ALL. He said that the next time we get Scott on the ice we have to call him and he will come and skate with him. So anyway, Bay News 9 was down at the rink today filming the kids and then they did an interview with Coach Jonny. This was all shown tonight and we saw Derry looking very cool speeding down the ice, looking uncannily like Wayne Gretsky it has to be said. I am so proud!
I would also like to take this opportunity to thank my good friend Stephanie Krupa for all her help. Without her Derry wouldnt have been able to do the hockey camp, what with me still not having a driving licence and Scott being ill, well it just wouldnt have been possible. Stephanie stepped in to help, she picks Derry up and takes him to the forum, she helps him with his skates and keeps an eye on him for me. Thank you Stephanie, we appreciate your support very much indeed.
And now for something completely different.
Here is Springsteen; intimidating the bin man….
Sunday, August 12, 2007
It’s been a pretty bleak weekend. Scott is going through the motions, he is taking all his pills, he is eating, he is watching a little TV, but there is a great tiredness and even worse, immense sadness, in his eyes.
He has slept a lot, he is very pale and only talks when spoken to, and even then his voice is only a whisper. There are no smiles; he doesn’t even make eye contact. He seems lost in his thoughts, a place I really don’t want him to be on his own.
He has slept a lot, he is very pale and only talks when spoken to, and even then his voice is only a whisper. There are no smiles; he doesn’t even make eye contact. He seems lost in his thoughts, a place I really don’t want him to be on his own.
Friday, August 10, 2007
Another infusion week down
Scott got his IV vincristine and doxorubicin yesterday. His ANC was up to 900 and everything else was okay in his blood work. That is the next to last doxorubicin. The dose he gets in 3 weeks will be the last dose he ever gets in his lifetime. This is regardless of whatever may happen in the future. That's a double-edged sword. Good it is done. Scary as hell that he's had as much as any doctor will allow in his lifetime due to its toxicity.
Such are the train of thoughts going through this.
The doctors have said it is okay for Scott to go back to school.
We tend to disagree. His counts drop below 500 during every cycle of treatment. The very same docs won't release a kid from the hospital with a count below 500. Yet it is okay for him to trot off to the largest breeding ground for bugs/colds, etc in the same condition? I'm a logical guy, and no type of logic works with those parameters.
Long story short, Scott will be home schooled this year.
Such are the train of thoughts going through this.
The doctors have said it is okay for Scott to go back to school.
We tend to disagree. His counts drop below 500 during every cycle of treatment. The very same docs won't release a kid from the hospital with a count below 500. Yet it is okay for him to trot off to the largest breeding ground for bugs/colds, etc in the same condition? I'm a logical guy, and no type of logic works with those parameters.
Long story short, Scott will be home schooled this year.
Wednesday, August 8, 2007
Our little drummer boy
Thank you to all our friends and family for helping make Scotts birthday so much fun for him. We bought these drums for Scott with the birthday money he recieved from you all, and although he has about as much musical talent and rhythm as a slug he seems to be enjoying them very much. We also thought that it would be great therapy for him, both mentally and physically, however the rest of us may well need a different kind of therapy before too much longer!
Thank you also to our chemo angels for bombarding Scott with birthday cards and to Mr Wallace, Mrs Shields and Mrs Stites from Mintz Elementary for remembering Scotts birthday with a great big cookie and a gift card.
One last thank you to Papa and Grand momma for yet another box of divine cookies which arrived this afternoon. They were about the only calories Scott ate today so thank you.
Scott is back in the clinic tomorrow for blood work, if his counts are above 750 he will have vincristine and doxorubicon, he will also start back on the steroids and chemo at home. He hates all this medication and has been going between anger and tears all day. All he wants is to be able to muck about outside on his rollerblades, wrestle with his friends in the yard, just normal kid stuff. Thats all.
We will come through this though. Scotts body will heal and hopefully my heart will too.
Our Tre Cool wanabee ....
Thank you also to our chemo angels for bombarding Scott with birthday cards and to Mr Wallace, Mrs Shields and Mrs Stites from Mintz Elementary for remembering Scotts birthday with a great big cookie and a gift card.
One last thank you to Papa and Grand momma for yet another box of divine cookies which arrived this afternoon. They were about the only calories Scott ate today so thank you.
Scott is back in the clinic tomorrow for blood work, if his counts are above 750 he will have vincristine and doxorubicon, he will also start back on the steroids and chemo at home. He hates all this medication and has been going between anger and tears all day. All he wants is to be able to muck about outside on his rollerblades, wrestle with his friends in the yard, just normal kid stuff. Thats all.
We will come through this though. Scotts body will heal and hopefully my heart will too.
Our Tre Cool wanabee ....
Tuesday, August 7, 2007
It's official, this ordeal has made us insane.
There is no other explanation for this being Scott's "main" birthday present. It's that exact set, except his is black.
And set up in OUR bedroom.
He can play from 8:00 a.m - 4:00 p.m., Monday-Friday (excluding holidays or when I'm on vacation).
Monday, August 6, 2007
It's Skittles Birthday!
Happy Birthday Scotty! Remember, no presents until I get home!
Scott is 11 today, so he's getting old.
Scott is 11 today, so he's getting old.
Sunday, August 5, 2007
Clear (er) eyes
Luckily Scott did not awake with a crusted over, red, goopy eye. It is still somewhat bloodshot, but certainly isn't pinkeye. That is a big relief.
Just wanted to update here. Now we are just dealing with an anxious Scott awaiting his birthday tomorrow, and he keeps hoping nothing goes wrong or he doesn't get a fever. Crossing our fingers for a good day!
Just wanted to update here. Now we are just dealing with an anxious Scott awaiting his birthday tomorrow, and he keeps hoping nothing goes wrong or he doesn't get a fever. Crossing our fingers for a good day!
Saturday, August 4, 2007
Scott may be getting pink eye. It doesnt hurt or itch and isnt goopy or swollen but it is definately pink at the outer edge of his eye. The doctor said to 'sleep on it' and see how its looking in the morning, if it is pink eye then he reckons we will know for sure after a nights sleep.
This we do not need 36 hours before his birthday. After all he has been through this year it would be very nice to have a hospital and hassle free birthday, especially after the disaster that befell us on Derrys birthday.
A friend of mine used to laugh and say "we are doomed", well that really is how we in this household have been feeling lately.
We'll just have to wait and see what tomorrow brings.
This we do not need 36 hours before his birthday. After all he has been through this year it would be very nice to have a hospital and hassle free birthday, especially after the disaster that befell us on Derrys birthday.
A friend of mine used to laugh and say "we are doomed", well that really is how we in this household have been feeling lately.
We'll just have to wait and see what tomorrow brings.
Thursday, August 2, 2007
Clinic.
Scott had another nice clinic visit this week. David took him in about 7.30am, he had a finger prick then back home by just after 9am. No leg shots or chemo. Next week if his bloodwork is okay he will have another shot of doxorubicon and vincristine, then 3 weeks later his very last dox. He will have used up his lifetimes allowance of this drug, no more ever in his life. The only medication he will take today is 1 little while pill for his pox. Yay! Tomorrow we start a different pill which he will take until the end of treatment, a preventative measure against more shingles. However, this pill is blue and Scott has never had blue pills before, he isnt happy about it one little bit.
His anc this morning was 390, critical neutropenia but great all the same.
Hgb was 8.5 and platelets 166. The platelet king rides again.
His anc this morning was 390, critical neutropenia but great all the same.
Hgb was 8.5 and platelets 166. The platelet king rides again.
Wednesday, August 1, 2007
Chemo Angels.
A few weeks ago I signed Scott up with a wonderful volunteer organization called Chemo Angels. The aim of Chemo Angels is to brighten up the lives of IV cancer patients, they do this through regular communication and encouragement, with letters and cards and small gifts. I know of several children who are with this program and believed it would be great for Scott too.
Scott has received more mail in the last 6 months than he has received in his entire life and we are grateful and thankful for every single card, letter, gift and box of yummy cookies from Atlanta. However, over time, and quite understandably so, his mail did start to thin out quite considerably, so when I read of this organization which send mail to cancer patients I knew it was for Scott.
Scott now has two chemo angels and what amazing and kind people they are. We have Angel David and his family from Maine (where the coon cats come from!!, see photo, any excuse for a Springsteen picture!), and Angel Laura and her family from Michigan. Both will be sending encouragement, letters and small gifts to Scott over the coming year. Remember, these people are volunteers, the cards, the letters, the gifts, the stamps, all paid for out of their own pockets.
We have been receiving our angel mail now for about three weeks, every few days there is something for Scott from either Angel Laura or Angel David, and really, its not just about ‘getting stuff’, yes he LOVES to get his parcels, many times it is the most exciting thing to happen all day, but Scott finds it incredible that perfect strangers (although not for long) would be willing to write to him, to send him presents and photographs and make him laugh and smile. This is all good for his soul, man! LOL. So anyway, to cut a long story short, our Chemo Angels rock and we are very grateful that these good folks picked our Scotty to watch over for the coming year.
Thank you very much Angel Laura and Angel David.
Scotty, 1 year ago, with a goofy smile and eyebrows!! and a rather mangy looking Springsteen....
Scott has received more mail in the last 6 months than he has received in his entire life and we are grateful and thankful for every single card, letter, gift and box of yummy cookies from Atlanta. However, over time, and quite understandably so, his mail did start to thin out quite considerably, so when I read of this organization which send mail to cancer patients I knew it was for Scott.
Scott now has two chemo angels and what amazing and kind people they are. We have Angel David and his family from Maine (where the coon cats come from!!, see photo, any excuse for a Springsteen picture!), and Angel Laura and her family from Michigan. Both will be sending encouragement, letters and small gifts to Scott over the coming year. Remember, these people are volunteers, the cards, the letters, the gifts, the stamps, all paid for out of their own pockets.
We have been receiving our angel mail now for about three weeks, every few days there is something for Scott from either Angel Laura or Angel David, and really, its not just about ‘getting stuff’, yes he LOVES to get his parcels, many times it is the most exciting thing to happen all day, but Scott finds it incredible that perfect strangers (although not for long) would be willing to write to him, to send him presents and photographs and make him laugh and smile. This is all good for his soul, man! LOL. So anyway, to cut a long story short, our Chemo Angels rock and we are very grateful that these good folks picked our Scotty to watch over for the coming year.
Thank you very much Angel Laura and Angel David.
Scotty, 1 year ago, with a goofy smile and eyebrows!! and a rather mangy looking Springsteen....
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