Scott and I bolted for the rad clinic this morning alone. I've been delegated as Rad Clinic Person. I don't know why. Scott has his "system" with everything involved with treatment. He's decided Stephanie can't deal with the radiation room, machine or process - or he just wants me there instead. There is no arguing or discussion with his mandates regarding whom does what duty. It is said, so it is done. Yesterday he went and got Stephanie and showed her the radiation room, and I don't think she'd do well with it either. LOL. She said there was no way she'd be able to be in there if it was her needing the treatment. I'll see if they'll let me take a picture in the room on Monday. It is odd - she can't do radiation. At times she's not allowed in for leg shots. I can't give steroids or 6mp or bactrim at home. I think he may feel one of us is being cheated if not having our designated duties. Scott has always worried about not involving everyone. The boy has a huge heart.
Day two was a breeze. Literally in the Big Lead Room for less than 10 minutes total. I told Scott with it only taking this long, we should save the drive and just let him lay his head in the microwave for a few seconds each day. He has a sense of humor today, which is a great step up from yesterday. Thought the steroids will take care of that soon enough.
He's not spewed any today, but still a few medicines to get down before bed. Got our fingers crossed.
Seems Steph's mum has been affected by the pollen here, or is just stuffed up sinus-wise from the plane flight. I walked in to her having a mask on, and being relegated to a back room. We dont' believe it is much of anything, but we'll be extra careful for a day or two.
On the way home, we picked up Scott's second pair of glasses, which were sunglasses that he didn't like. Now he has two pairs. The prescription had a minor change, and the optician told us since his old ones are scratched, we should have them replaced with the new prescription prior to the 1-year scratch warranty expires in September. A big thanks to Mr. Monty there at Costco Optical for the not-so-subtle hint.
Now for what we hope to be an uneventful weekend, and 9 days off for me! I just thought about what my work schedule had been like since diagnosis, and it was a bit sad. I was off for 11 days when Scott first got sick, but obviously that was nothing like one wants time off to be. Other than that, there has been the odd day here and there. It should be a nice time to just kick back with the boys, Stephanie and her mom. Nothing but a ride over to the hospital and quick visits to get nuked.
The golf donation page narrative was edited (with a large Thank You to Yvonne, and her many years of experience with the TECO Foundation helping out with that!), and the color scheme changed to best match Scott's blog here. Thanks to those of you that have got the donation ball rolling very early with some generous donations. More than 3 months out and about 10% of the goal is met. But don't fret, we can go as far beyond the goal as possible.
And speaking of Dream Fund topics, the Dream Fund coordinators have set time to meet with Scott next Thursday while he's at the clinic to talk about his Dream, and just what he wants to do. We believe he's leaning towards a packed Disney week, but one never knows. It is his Dream. It is his choice. Regardless of his decision, Brandon has already contacted the Dream Fund to sign up and play golf for Scott. I dunno if he can handle that many holes in a day, as he's getting old now!
Scott & Sunny
Friday, June 29, 2007
Thursday, June 28, 2007
A Full Clinic Day
All day at the clinic today for Scott. He arrived just around 8, and we all loaded up in the van at just after 5. Good bloodwork resulted in an "okay to go" for everything. Scott was put under for a spinal tap and intrathecal methatrexate. Doc Tebbi said his spinal fluid still looked good and clear. After the day hospital routine of lying flat for an hour, it was back over to the clinic. Vincristine, Doxorubicin and the 17th set of leg shots all came in quick succession. Then the long two-hour wait - mandatory after leg shots.
Over to radiation we went just after 4. Scott tolerated the whole process on "first day" radiation very well. Lots of checks, x-rays, re-checks for alignment and they were set to go with his treatment. Scott gets 200 rads each day and will do so for 9 days. The "beam on" time for this amount of radiation is literally a matter of about 5 seconds for each side of his head.
It was a very long day for him, and he was quite emotional, upset and shaky in the period after being under through his leg shots being done. Once done with the leg jabs, his entire mood seemed to ease, and by the time we made it to radiation, he was in a good mood and energetic.
Then, just as I posted this message, a yell comes from his room from Stephanie. The nausea has started, and a nice damp rag was needed. Seems almost certain with the first dose of steroids at the beginning of the cycle. A long day made longer for the little guy.
Now we drive back tomorrow morning for the 2nd radiaton session. Scheduled for 10:55 in the morning. We'll see how that goes. It should be very quick and uneventful.
Over to radiation we went just after 4. Scott tolerated the whole process on "first day" radiation very well. Lots of checks, x-rays, re-checks for alignment and they were set to go with his treatment. Scott gets 200 rads each day and will do so for 9 days. The "beam on" time for this amount of radiation is literally a matter of about 5 seconds for each side of his head.
It was a very long day for him, and he was quite emotional, upset and shaky in the period after being under through his leg shots being done. Once done with the leg jabs, his entire mood seemed to ease, and by the time we made it to radiation, he was in a good mood and energetic.
Then, just as I posted this message, a yell comes from his room from Stephanie. The nausea has started, and a nice damp rag was needed. Seems almost certain with the first dose of steroids at the beginning of the cycle. A long day made longer for the little guy.
Now we drive back tomorrow morning for the 2nd radiaton session. Scheduled for 10:55 in the morning. We'll see how that goes. It should be very quick and uneventful.
Wednesday, June 27, 2007
Not a happy camper.
Tomorrow we have: doxorubicin (boo), vincristine (hiss), aspariganase (ouch), intrathecal methotrexate (requiring general anaesthetic), total brain radiation (which I dont even want to think about), 6mp (strawberry flavoured chemo) and ODT prednisone (steroids, and lots of them).
Scott had a bit of a breakdown earlier, the anaesthetic scares him, and he's also very nervous about starting radiation and now that we are starting to find routine he knows that 2 or 3 days from now the pains will start.
My poor old mum is going to face a baptism of fire tomorrow, pediatric oncology can be a very depressing and heartbreaking place. The sad thing is, after a short while you become part of it, the horror becomes normal and no longer shocking. You need to give yourself a bit of a shake now and then and remind yourself that whilst cancer may be natural it is not normal in a child. The odds of Scott getting t-cell are about 1 in a million I believe. People say you find your "new normal", well I'll be damned if I will ever accept this as OUR normal!
Its like a real bad trip.
Scott had a bit of a breakdown earlier, the anaesthetic scares him, and he's also very nervous about starting radiation and now that we are starting to find routine he knows that 2 or 3 days from now the pains will start.
My poor old mum is going to face a baptism of fire tomorrow, pediatric oncology can be a very depressing and heartbreaking place. The sad thing is, after a short while you become part of it, the horror becomes normal and no longer shocking. You need to give yourself a bit of a shake now and then and remind yourself that whilst cancer may be natural it is not normal in a child. The odds of Scott getting t-cell are about 1 in a million I believe. People say you find your "new normal", well I'll be damned if I will ever accept this as OUR normal!
Its like a real bad trip.
Tuesday, June 26, 2007
Tom writes quick.
As he stated, Tom's prolific songwriting enabled him to write, record and upload the song he mentioned in lightning speed. Click here to see the lyrics and download "Mamma I Won't Let You Down". You can also visit Tom's SongaWeek.Com site, and witness the true prolific nature of his writing. I've put these links over in the right column as well.
Just some background for some of you folks - Tom is THE guy that created a place called BruceCats - the website where Stephanie and I first crossed paths (and infamously mentioned in a shout-out by Springsteen in a 2003 show in Duluth, GA). Tom and I have bantered and butted heads about politics for close to 5 years now, but we both know disagreeing on any topic (or even most) doesn't mean we aren't similar. As they say where I grew up - "he's good people". And he's already linked up the Golf Marathon donation site on his webpage.
A mighty large Thank You from everyone here to a man living amongst the coal mines of Pennsylvania.
Just some background for some of you folks - Tom is THE guy that created a place called BruceCats - the website where Stephanie and I first crossed paths (and infamously mentioned in a shout-out by Springsteen in a 2003 show in Duluth, GA). Tom and I have bantered and butted heads about politics for close to 5 years now, but we both know disagreeing on any topic (or even most) doesn't mean we aren't similar. As they say where I grew up - "he's good people". And he's already linked up the Golf Marathon donation site on his webpage.
A mighty large Thank You from everyone here to a man living amongst the coal mines of Pennsylvania.
click me
blogging about Scott,
from Tom Flannery, someone we are both very proud to call our friend.
*********
Monday, June 25, 2007
Scott
Sometimes people come to me and ask for a song. A song about something or someone. I'm honored by every request. And as long as the subject matter is not something I object too, I never say no.
I'm trying to write a song now for a little boy named Scott. Scott was diagnosed with "t cell acute lymphoblastic leukemia", which is about as bad as it sounds. His parents and I are long distance friends, and hearing the news the other day shattered me. I don't understand why bad things continuously happen to good people. And I'm not much for the God business either, but I will say that if there indeed is one, he seems to be doing a fucking shit job.
These things are a fluke-ish roll of the dice. We walk in the rain and never expect to get hit by lightning. We cross the street and never expect to be hit with a car. We swim in the ocean and never expect to be chomped on by a shark. We hear about these things, but they always happen to others. Far away. We can turn the page. Or turn the channel. We can huddle with our own loved ones in the dark....listen to the sound of our own breathing. Secure. Content. Isolated from all the rottenness in the world. Our defense becomes a sort of huge malarial mosquito netting......covering everything and everybody we hold dear. Of course we feel the pain of others, but it becomes a dull throb after a while.
Until the rottenness invades. What words mean anything after you hear "your son has cancer"? What portions of your life merit any consideration whatsoever? Scott's Mom told me that she and her husband never even listen to music anymore. And from this admission, I perhaps can gain a tiny glimpse into their anguish. Music was always a bright star in the sky for them both. But for now at least, there's no songs to sing. There's only their boy.
I'm going to write this song. I've been thinking about it all day. How to approach it. I don't want to get all fucking maudlin. That's hackery. I need to tell myself that if this kid is in any way like his parents (and what kid ain't), he may track my ass down in the years to come and remind me about the shitty job I did. I would like to avoid that if possible.
But the song ain't just for Scott. Or his Mom or his Dad. It's for me too. And my own kids. For all of us who ask for little and expect even less....but must doggedly insist that our children are secure.
And so with that head of steam.....I'm off to work.
*******************
from Tom Flannery, someone we are both very proud to call our friend.
*********
Monday, June 25, 2007
Scott
Sometimes people come to me and ask for a song. A song about something or someone. I'm honored by every request. And as long as the subject matter is not something I object too, I never say no.
I'm trying to write a song now for a little boy named Scott. Scott was diagnosed with "t cell acute lymphoblastic leukemia", which is about as bad as it sounds. His parents and I are long distance friends, and hearing the news the other day shattered me. I don't understand why bad things continuously happen to good people. And I'm not much for the God business either, but I will say that if there indeed is one, he seems to be doing a fucking shit job.
These things are a fluke-ish roll of the dice. We walk in the rain and never expect to get hit by lightning. We cross the street and never expect to be hit with a car. We swim in the ocean and never expect to be chomped on by a shark. We hear about these things, but they always happen to others. Far away. We can turn the page. Or turn the channel. We can huddle with our own loved ones in the dark....listen to the sound of our own breathing. Secure. Content. Isolated from all the rottenness in the world. Our defense becomes a sort of huge malarial mosquito netting......covering everything and everybody we hold dear. Of course we feel the pain of others, but it becomes a dull throb after a while.
Until the rottenness invades. What words mean anything after you hear "your son has cancer"? What portions of your life merit any consideration whatsoever? Scott's Mom told me that she and her husband never even listen to music anymore. And from this admission, I perhaps can gain a tiny glimpse into their anguish. Music was always a bright star in the sky for them both. But for now at least, there's no songs to sing. There's only their boy.
I'm going to write this song. I've been thinking about it all day. How to approach it. I don't want to get all fucking maudlin. That's hackery. I need to tell myself that if this kid is in any way like his parents (and what kid ain't), he may track my ass down in the years to come and remind me about the shitty job I did. I would like to avoid that if possible.
But the song ain't just for Scott. Or his Mom or his Dad. It's for me too. And my own kids. For all of us who ask for little and expect even less....but must doggedly insist that our children are secure.
And so with that head of steam.....I'm off to work.
*******************
Ye olde doom-ed one.
It seems we may not be having nice'n spicy Nik Naks for tea now! The first plane was acting up a bit and I guess they didnt want to just 'chance it' so they squeezed her onto another plane which went via Houston. Anyway somewhere over Ireland the kid in the seat in front of my mum had an epileptic fit, so it was back to Gatwick and a bit of a sit on the tarmac. We're hoping the plane tries again soon and maybe if the pilot puts the foot down she may even catch her connecting flight.
I want to say a big thank you to Carolyn and Ken for their generosity. We recieved a big contribution to our pizza appeal and Carolyn also treated me with a just for mum gift card which was soon spent on 'Bare Escentuals' - very expensive dust, according to David. LOL!
I'll leave you with a photo of Scott getting his doxorubicin, very nasty stuff! He is approaching the end of his lifetime allowance of this drug, 4 more treatments to go. Also in the photo is 'radiation rod', Scott seems to think by this time next week he'll be glowing too, we'll get Nana to break the bad news to him. :)
I want to say a big thank you to Carolyn and Ken for their generosity. We recieved a big contribution to our pizza appeal and Carolyn also treated me with a just for mum gift card which was soon spent on 'Bare Escentuals' - very expensive dust, according to David. LOL!
I'll leave you with a photo of Scott getting his doxorubicin, very nasty stuff! He is approaching the end of his lifetime allowance of this drug, 4 more treatments to go. Also in the photo is 'radiation rod', Scott seems to think by this time next week he'll be glowing too, we'll get Nana to break the bad news to him. :)
Monday, June 25, 2007
5 Months in, and GIVE MONEY.
Yesterday marked 5 months since the evening Scott got sick after dinner. In some ways, it seems a much shorter time since that rainy night when we had to drive to the hospital. In other ways, it seems much longer. It is hard to recall what things were like before that day to me. I think the shock, stress and exhausting nature of everything tends to blur memories of the time just before Scott's diagnosis. So much has happened since January it is hard to comprehend. We know things now that no one should really ever know. Far too much about bloodwork and drugs and different tests. I think we could drive to the hospital/clinic with our eyes closed. Certainly we could navigate St. Joseph's blindfolded.
Through 5 months we've seen a lot of "new" faces and families that were diagnosed after Scott at a hospital already heaving with cases. I never knew such a number of kids were fighting such battles. It is heartbreaking.
Scott was in a great mood this weekend. Very upbeat and energetic. Seems to have done well with this 3-week cycle. He does have a very heavy week of treatment, including the start of radiation this coming Thursday. We'll keep our fingers crossed.
I've added a text box over in the right column about the Golf Marathon. Click on the donate button, and help us make Cheyenne's Dream come true. Her dream is likely very similar to the one Scott will submit, so us trying to make her's a reality is very important. Someone somewhere will be giving in some form to fund Scott's Dream. Please help us!
Through 5 months we've seen a lot of "new" faces and families that were diagnosed after Scott at a hospital already heaving with cases. I never knew such a number of kids were fighting such battles. It is heartbreaking.
Scott was in a great mood this weekend. Very upbeat and energetic. Seems to have done well with this 3-week cycle. He does have a very heavy week of treatment, including the start of radiation this coming Thursday. We'll keep our fingers crossed.
I've added a text box over in the right column about the Golf Marathon. Click on the donate button, and help us make Cheyenne's Dream come true. Her dream is likely very similar to the one Scott will submit, so us trying to make her's a reality is very important. Someone somewhere will be giving in some form to fund Scott's Dream. Please help us!
Thursday, June 21, 2007
Thankfully we had an uneventful but loooooong clinic visit today. A much better ANC at this time in the cycle. Up over 600. All other readings good. Derry even filmed the leg shot process, but it got deleted somehow. We'll try again next week and see if we can get Christine in the shoot.
Scott is feeling okay this week. We went off to the Children's Cancer Center this evening for a couple of hours. It was pizza night, so Scott enjoyed that. He also got out to play some street hockey (on foot) with some of the other kids and Derry. He was quite active considering it was clinic day. That is a very nice thing to see. I spent some time upstairs (the "adult" room). The Center is floating the idea of starting a Sibs group, which would ONLY involved sibling of the cancer kids. That would be a great thing for Derry to get around some kids his age that are also dealing with brothers/sisters that have cancer.
We also saw a number of our "clinic mates" from St. Joseph's. Several are off those folks are also going to be headed off to Disney on Labor Day weekend for the ACS "Families ROCK Weekend". That should be a good time, and we are all looking forward to that trip. It should be a good, short-drive getaway.
I also have a forewarning for all you folks. I've found something right up my alley related to Cancer Kid fundraising. The Children's Dream Fund has a Golf Marathon every year. It is on Monday, October 8th (Columbus Day). Basically my part is easy - I show up for a 7:30 a.m. start - and play as many holes as possible before sunset (about 6:45 that day I believe). My target (as well as each golfer involved) is 100 holes. Doing that math, that is 1 hole every 6 1/2 minutes.
Luckily I've got lots of experience thanks to our Guru Golf trips and many looooooong days with the golfing buddies on the course to make that number not seem so crazy.
I mention this because, as I said, my part is easy. Soon I will be posting a webpage link for ALL OF YOU to committ pledges for the effort. The pledge can be per-hole, or a flat amount.
ALL of the funds I raise will (and this is a bit ironic) be used to fund a specific kid's Dream. The Dream Fund works just like the Make-A-Wish foundation, and the Children's Dream Fund works in concert with Make-A-Wish. Yes, I'll be raising money for a kid with cancer to make their dream come true, and it will not be Scott. I have requested I play for a kid being treated at St. Joseph's.
The way I see it, someone somewhere (and likely unknown to us) will fund Scott's "Wish" when he decides to plan it. If all I need to do is play golf at a manic pace from sunrise to sunset for one day to make that "Wish" a reality for another kid (and unabashedly hound everyone I know for pledges) - that seems a very small amount of effort.
Rest assured, I'll keep everyone reminded of the date, the process and the webpage when they build mine and pair me with one of the kids.
Scott is feeling okay this week. We went off to the Children's Cancer Center this evening for a couple of hours. It was pizza night, so Scott enjoyed that. He also got out to play some street hockey (on foot) with some of the other kids and Derry. He was quite active considering it was clinic day. That is a very nice thing to see. I spent some time upstairs (the "adult" room). The Center is floating the idea of starting a Sibs group, which would ONLY involved sibling of the cancer kids. That would be a great thing for Derry to get around some kids his age that are also dealing with brothers/sisters that have cancer.
We also saw a number of our "clinic mates" from St. Joseph's. Several are off those folks are also going to be headed off to Disney on Labor Day weekend for the ACS "Families ROCK Weekend". That should be a good time, and we are all looking forward to that trip. It should be a good, short-drive getaway.
I also have a forewarning for all you folks. I've found something right up my alley related to Cancer Kid fundraising. The Children's Dream Fund has a Golf Marathon every year. It is on Monday, October 8th (Columbus Day). Basically my part is easy - I show up for a 7:30 a.m. start - and play as many holes as possible before sunset (about 6:45 that day I believe). My target (as well as each golfer involved) is 100 holes. Doing that math, that is 1 hole every 6 1/2 minutes.
Luckily I've got lots of experience thanks to our Guru Golf trips and many looooooong days with the golfing buddies on the course to make that number not seem so crazy.
I mention this because, as I said, my part is easy. Soon I will be posting a webpage link for ALL OF YOU to committ pledges for the effort. The pledge can be per-hole, or a flat amount.
ALL of the funds I raise will (and this is a bit ironic) be used to fund a specific kid's Dream. The Dream Fund works just like the Make-A-Wish foundation, and the Children's Dream Fund works in concert with Make-A-Wish. Yes, I'll be raising money for a kid with cancer to make their dream come true, and it will not be Scott. I have requested I play for a kid being treated at St. Joseph's.
The way I see it, someone somewhere (and likely unknown to us) will fund Scott's "Wish" when he decides to plan it. If all I need to do is play golf at a manic pace from sunrise to sunset for one day to make that "Wish" a reality for another kid (and unabashedly hound everyone I know for pledges) - that seems a very small amount of effort.
Rest assured, I'll keep everyone reminded of the date, the process and the webpage when they build mine and pair me with one of the kids.
Monday, June 18, 2007
A picture's worth 1,000 words
Stephanie's picture below says it all.
Mask day at the radiation clinic. The "making" of the mask was somewhat anti-climatic. We weren't sure how long the process takes.
Less than a minute to stretch it over the face and clamp it to the table. It is a nice piece of flat, woven plastic material before they start. A bit of time in a heated water bath - and over the face it goes.
Scott did exceptionally well with the process. Not moving the least bit. Even having his lips slightly open to breathe through his mouth as they said. He didn't twitch a muscle through the fitting, and the following CT scan. The CT scan was done solely for mapping his head in the computer, so the radiation doesn't stray when they start next week. Even the technician commented on just how still his entire body was during the CT scan. He didn't even twitch a leg or hand. He also stated it "wasn't bad", and thinks the mask is something he'll be able to scare Derry with in some way after his treatment.
We're glad he didn't get claustrophobic or scared this morning. That was a huge worry for us, but turned out to be one of the things in the "not as bad as expected" category. So now we just continue onward to Thursday's clinic visit.
Stephanie's mom will be here starting next Tuesday. She'll get to be with us during one of Scott's "heavy" weeks starting in 10 days. All the chemo. A bone marrow aspiration and spinal tap. Legs shots. And the first day of radiation if all goes well.
Not to mention she may suffer heat stroke when she steps out of doors here for the first time.
Some good news concerning our little JJ. She got through the operation in NYC and is responding well. So well in fact, Sloan-Kettering has discharged her. JJ and Mary will be back here late tomorrow night via their Angel Flight. That is roughly two weeks sooner than expected, and is very good news for Mary, JJ and Mary's dad. We'll be glad to see JJ back in the St. Joe's clinic. She's got a lot in front of her, but she has put one major hurdle behind her now.
Mask day at the radiation clinic. The "making" of the mask was somewhat anti-climatic. We weren't sure how long the process takes.
Less than a minute to stretch it over the face and clamp it to the table. It is a nice piece of flat, woven plastic material before they start. A bit of time in a heated water bath - and over the face it goes.
Scott did exceptionally well with the process. Not moving the least bit. Even having his lips slightly open to breathe through his mouth as they said. He didn't twitch a muscle through the fitting, and the following CT scan. The CT scan was done solely for mapping his head in the computer, so the radiation doesn't stray when they start next week. Even the technician commented on just how still his entire body was during the CT scan. He didn't even twitch a leg or hand. He also stated it "wasn't bad", and thinks the mask is something he'll be able to scare Derry with in some way after his treatment.
We're glad he didn't get claustrophobic or scared this morning. That was a huge worry for us, but turned out to be one of the things in the "not as bad as expected" category. So now we just continue onward to Thursday's clinic visit.
Stephanie's mom will be here starting next Tuesday. She'll get to be with us during one of Scott's "heavy" weeks starting in 10 days. All the chemo. A bone marrow aspiration and spinal tap. Legs shots. And the first day of radiation if all goes well.
Not to mention she may suffer heat stroke when she steps out of doors here for the first time.
Some good news concerning our little JJ. She got through the operation in NYC and is responding well. So well in fact, Sloan-Kettering has discharged her. JJ and Mary will be back here late tomorrow night via their Angel Flight. That is roughly two weeks sooner than expected, and is very good news for Mary, JJ and Mary's dad. We'll be glad to see JJ back in the St. Joe's clinic. She's got a lot in front of her, but she has put one major hurdle behind her now.
Sunday, June 17, 2007
Happy fathers day sunshine!
Well now all that's sure on the boulevard
Is that life is just a house of cards
As fragile as each and every breath
Of this boy sleepin' in our bed
Tonight let's lie beneath the eaves
Just a close band of happy thieves
And when that train comes we'll get on board
And steal what we can from the treasures of the Lord
It's been along long drought baby
Tonight the rain's pourin' down on our roof
Looking for a little bit of God's mercy
I found living proof
Friday, June 15, 2007
Stephanie is dead-on about this being a living hell. There is nothing outside of losing a child which I can think would be a worse situation to have with a little kid. It's breaks your heart on an hourly basis - if it doesn't do it more often.
It will make you angry very often. It will make you sad even more often.
Any parent in the world just wants good things for their child. This disease makes you realize that with all of the "normal" challenges with kids, they hardly register as anything remotely considered to be "challenging" now. Yes, perspective changes drastically. We are planning to take in a movie at the theater this weekend if Scott's feels good. Something as minor as that now is a HUGE thing to simply be able to do and not be a large risk to him.
We don't drag Scott around in public when his counts are down. Even if it is a wonderful charity event or some type of event done for cancer kids. It is very simple - counts low? We don't go. On our visit to the hospital this week, Doc Rossbach commented he was concerned when he got called by us. His concern came from the fact Scott hasn't had even one fever since diagnosis. Stephanie gets good-humored ribbing from the clinic folks about us keeping Scott sort of like "The Boy in the Bubble".
But it is simple. The oncologist told us from the first day fevers and infections were the complications that need to be avoided at all cost. So if his counts are down, we don't expose him to anything. Even some of the other cancer kids parents tend to think we keep him "too contained" - but I don't believe any of them have a kid that's not contacted a bug or had a fever since diagnosis.
So a movie nowadays is a big time out. And it likely will be for quite some time. But that is okay, as it is what is best for Scott.
Nothing else matters now. Nothing else is remotely close to being on the "important" list aside from caring for Scott and Derry.
It will make you angry very often. It will make you sad even more often.
Any parent in the world just wants good things for their child. This disease makes you realize that with all of the "normal" challenges with kids, they hardly register as anything remotely considered to be "challenging" now. Yes, perspective changes drastically. We are planning to take in a movie at the theater this weekend if Scott's feels good. Something as minor as that now is a HUGE thing to simply be able to do and not be a large risk to him.
We don't drag Scott around in public when his counts are down. Even if it is a wonderful charity event or some type of event done for cancer kids. It is very simple - counts low? We don't go. On our visit to the hospital this week, Doc Rossbach commented he was concerned when he got called by us. His concern came from the fact Scott hasn't had even one fever since diagnosis. Stephanie gets good-humored ribbing from the clinic folks about us keeping Scott sort of like "The Boy in the Bubble".
But it is simple. The oncologist told us from the first day fevers and infections were the complications that need to be avoided at all cost. So if his counts are down, we don't expose him to anything. Even some of the other cancer kids parents tend to think we keep him "too contained" - but I don't believe any of them have a kid that's not contacted a bug or had a fever since diagnosis.
So a movie nowadays is a big time out. And it likely will be for quite some time. But that is okay, as it is what is best for Scott.
Nothing else matters now. Nothing else is remotely close to being on the "important" list aside from caring for Scott and Derry.
Wednesday, June 13, 2007
Not happy.
Well Scotty has cried himself to sleep, too tired and too scunnered to be consoled. I tell you watching your child endure this nightmare is just a living hell. I am so angry right now. Life isn’t fair but it can piss off and go be unfair elsewhere.
Released and at home.
Got release and at home now.
Scott's color has come back much closer to "normal" since last night. The one unit of blood certainly helped a bunch. He's a bit stoned at the moment, still lingering from the morphine Doc Rossbach gave him this morning. The doc was really upset with the state of Scott this morning. He hadn't slept. His legs, feet and back were hurting, and he just had no fight or energy in him. Very, very weepy. The doctor used the morphine to calm him down as much as to deal with the pain.
We've also come home with a script for some liquid Tylenol/Codeine. That should help with dealing through the few days of the worst pain.
It was nice to go to a hospital, get admitted and not be there more than a day. I know Scott doesn't think there was anything nice about it at all, but seeing the place and not being there at least 4 or 5 days is easier to tolerate.
Scott was also okayed to go ahead with the leg shots scheduled for tomorrow. So all his work for the week is done, which means no clinic visit at all tomorrow. That makes 15 of those 20 shots behind him now. He's now bedded down and watching "Little Britain" on dvd. Hopefully he'll sleep well tonight.
We did get a pleasant surprise while at the hospital today. The social worker, Melissa, did let us know we've been invited to the American Cancer Society's "Families R.O.C.K." weekend at Disney. It happens the Friday, Saturday and Sunday of Labor Day weekend. Seems they set you up at the Contemporary Resort for Friday and Saturday night, a dinner on Friday night, programs all day Saturday (kids and parents are seperate), a free night Saturday night and park tickets for Sunday. They also allow you to extend your stay at your own cost with the rooms being discounted heavily. That should be a nice break by the end of summer. Yes, Disney is mobbed then, but you do get no-line-waiting privileges at every attraction. Like I said, that was a nice surprise on a crappy day otherwise.
We do have some news about little JJ that went to NYC. Her operation last week was very long - 10 hours they worked on her. But they did get the critical tumor out of her without making more problems. They also removed 3 others. She's doing well now according to her mom Mary. Hopefully there are no further complications for her, and she gets back down here in a few weeks.
That said, we ran into a lady with a little 4-year-old today at the hospital. That little guy was just diagnosed Monday with the same disease as JJ, and they are already talking about him having a stay up in NYC. His mom's friend was talking to Stephanie, and wanted Stephanie to talk to the mother, since Stephanie wasn't "new" to this nightmare. "New" or "recent" are very relative terms with this horror.
It just never ends. Sadly, there always seem to be "new" kids.
Scott's color has come back much closer to "normal" since last night. The one unit of blood certainly helped a bunch. He's a bit stoned at the moment, still lingering from the morphine Doc Rossbach gave him this morning. The doc was really upset with the state of Scott this morning. He hadn't slept. His legs, feet and back were hurting, and he just had no fight or energy in him. Very, very weepy. The doctor used the morphine to calm him down as much as to deal with the pain.
We've also come home with a script for some liquid Tylenol/Codeine. That should help with dealing through the few days of the worst pain.
It was nice to go to a hospital, get admitted and not be there more than a day. I know Scott doesn't think there was anything nice about it at all, but seeing the place and not being there at least 4 or 5 days is easier to tolerate.
Scott was also okayed to go ahead with the leg shots scheduled for tomorrow. So all his work for the week is done, which means no clinic visit at all tomorrow. That makes 15 of those 20 shots behind him now. He's now bedded down and watching "Little Britain" on dvd. Hopefully he'll sleep well tonight.
We did get a pleasant surprise while at the hospital today. The social worker, Melissa, did let us know we've been invited to the American Cancer Society's "Families R.O.C.K." weekend at Disney. It happens the Friday, Saturday and Sunday of Labor Day weekend. Seems they set you up at the Contemporary Resort for Friday and Saturday night, a dinner on Friday night, programs all day Saturday (kids and parents are seperate), a free night Saturday night and park tickets for Sunday. They also allow you to extend your stay at your own cost with the rooms being discounted heavily. That should be a nice break by the end of summer. Yes, Disney is mobbed then, but you do get no-line-waiting privileges at every attraction. Like I said, that was a nice surprise on a crappy day otherwise.
We do have some news about little JJ that went to NYC. Her operation last week was very long - 10 hours they worked on her. But they did get the critical tumor out of her without making more problems. They also removed 3 others. She's doing well now according to her mom Mary. Hopefully there are no further complications for her, and she gets back down here in a few weeks.
That said, we ran into a lady with a little 4-year-old today at the hospital. That little guy was just diagnosed Monday with the same disease as JJ, and they are already talking about him having a stay up in NYC. His mom's friend was talking to Stephanie, and wanted Stephanie to talk to the mother, since Stephanie wasn't "new" to this nightmare. "New" or "recent" are very relative terms with this horror.
It just never ends. Sadly, there always seem to be "new" kids.
Scott is getting blood at the moment. Dr. Rossbach has said he can go home this afternoon if he has no fever when he checks on him then. He was in a bad way through the night, and was given morphine this morning. His legs were hurting, jaw was hurting and he was just exhausted.
His red blood count has dropped about 25% since last week, so the doc said if that were one of us, we'd be basically useless and hardly be able to walk. It is typical for his red count to drop at this stage of the cycle, but just dropped a bit more than normal. Of course we also have to remember he was delayed a week on chemo, and was borderline last week to get it then.
It all relates together in some way, but it is very complicated.
He did have an EKG this morning, and was schedule for an ECG tomorrow (this was due to the normal cycle of that test and was due). They are going ahead with that today so he doesn't have to wait late tomorrow afternoon.
So now we wait and hope he has no temperature this afternoon so he can sleep at home before tomorrow's clinic visit and leg shots. Stephanie needs sleep as well. I don't think she slept at all, and I know Scott hasn't.
His red blood count has dropped about 25% since last week, so the doc said if that were one of us, we'd be basically useless and hardly be able to walk. It is typical for his red count to drop at this stage of the cycle, but just dropped a bit more than normal. Of course we also have to remember he was delayed a week on chemo, and was borderline last week to get it then.
It all relates together in some way, but it is very complicated.
He did have an EKG this morning, and was schedule for an ECG tomorrow (this was due to the normal cycle of that test and was due). They are going ahead with that today so he doesn't have to wait late tomorrow afternoon.
So now we wait and hope he has no temperature this afternoon so he can sleep at home before tomorrow's clinic visit and leg shots. Stephanie needs sleep as well. I don't think she slept at all, and I know Scott hasn't.
Unscheduled Visit
Want to post a quick note on here (it's 3:30 a.m. on Wednesday). Scott was really lethargic all day Tuesday, and kept wanting to sleep. In the evening, he wanted to go to bed about 8:30 which is very out of the ordinary these days. We were noticing him being very pale, and his skin wouldn't blanch when pressed with a finger. This made us worry about him being severely anemic, so Steph called the doctors.
They wanted us to bring him in for bloodwork in the ER, so we headed out just after 10 p.m. His blood work came back low, but not abnormaly low. The ER doc contacted Dr. Rossbach, and he wanted to admit him. Doc Rossbach stated to the ER doctor that he "knew Scott and Scott wasn't one to complain", so he wanted him observed, especially since it was about 2 a.m.
So now Derry and I are just back home and Scott and Stephanie are checked into St. Joseph's. We'll know more after he's had morning bloodwork and been visited by the oncologist. It most likely is nothing of worry, but we are obviously concerned.
Scott has been checked in to room 228.
They wanted us to bring him in for bloodwork in the ER, so we headed out just after 10 p.m. His blood work came back low, but not abnormaly low. The ER doc contacted Dr. Rossbach, and he wanted to admit him. Doc Rossbach stated to the ER doctor that he "knew Scott and Scott wasn't one to complain", so he wanted him observed, especially since it was about 2 a.m.
So now Derry and I are just back home and Scott and Stephanie are checked into St. Joseph's. We'll know more after he's had morning bloodwork and been visited by the oncologist. It most likely is nothing of worry, but we are obviously concerned.
Scott has been checked in to room 228.
Monday, June 11, 2007
Monday
I never did update the specifics from last Thursday. Scott did NOT get his mask made, and this will take place on June 18 now. His actual radiation treatment is now schedule to start on June 28 if no more delays occur. Stephanie covered how Scott is feeling right now. This is the front end of the bad part of the 3-week cycle.
Stephanie also discovered something we didn't know about the Doxorubicin. Once Scott receives the last scheduled dosage (on week 31 I believe), he gets a letter he must keep, as he can never have that drug again in his lifetime. Makes you scared to know just what it is.
We are off today for Brad Richards "End of Season" party for the kids. Hopefully that will lift his spirits a bit during this crappy time for him.
Stephanie also discovered something we didn't know about the Doxorubicin. Once Scott receives the last scheduled dosage (on week 31 I believe), he gets a letter he must keep, as he can never have that drug again in his lifetime. Makes you scared to know just what it is.
We are off today for Brad Richards "End of Season" party for the kids. Hopefully that will lift his spirits a bit during this crappy time for him.
Sunday, June 10, 2007
Drugged Up
It’s Sunday night and Scott is loaded up to the hilt with steroids, chemo and antibiotics and is feeling dreadful. He’s laying in our bed under a mountain of covers with a woollie hat on his head, cold and depressed but gaining some enjoyment from watching some badass getting tazered on ‘Cops’.
The vincristine has taken affect and his jaw is giving him pain, tomorrow his legs will likely start to hurt and by Tuesday he will be limping. The steroids have given him a lovely nuclear ‘glow’ and his face is puffing up nicely.
I hate all these drugs but at the same time I am obviously so grateful for them. David and I are all to aware that it is only in the last generation that our children have had a real good chance at fighting this disease, had it been one of us (or one of you!) then we probably wouldn’t have made it. Someone told me the other day that we are on the verge of being able to stop cancer in its tracks, to turn it around and wave the bitch goodbye. Lets hope so eh?
One last thing …
You know what it’s like when you get a birthday card and you open it up and there’s money in it? Its great isn’t it? Well that happened to us the other day and it wasn’t even any of our birthdays!!!!
Thank you Grand momma and Papa, thank you very much.
The vincristine has taken affect and his jaw is giving him pain, tomorrow his legs will likely start to hurt and by Tuesday he will be limping. The steroids have given him a lovely nuclear ‘glow’ and his face is puffing up nicely.
I hate all these drugs but at the same time I am obviously so grateful for them. David and I are all to aware that it is only in the last generation that our children have had a real good chance at fighting this disease, had it been one of us (or one of you!) then we probably wouldn’t have made it. Someone told me the other day that we are on the verge of being able to stop cancer in its tracks, to turn it around and wave the bitch goodbye. Lets hope so eh?
One last thing …
You know what it’s like when you get a birthday card and you open it up and there’s money in it? Its great isn’t it? Well that happened to us the other day and it wasn’t even any of our birthdays!!!!
Thank you Grand momma and Papa, thank you very much.
You guys rock!
Oh and another last thing, here is a photo of Scotty, I took it whilst we were waiting for the radiation doctor who was running late as the "machine broke down". He was sitting there in the waiting room with his hat perched on top of his head with a perfectly straight face just delighted to be entertaining the other cancer patients who couldnt help but give him a funny look and a giggle.
Thursday, June 7, 2007
Next round ok to go.
Got Scott at clinic this morning. His ANC has manage to elevate to 735. Borderline to get his next rounds of Vincristine, Dox and steroids. However, Doc Obzut has given the green light to go ahead with treatment. We also have a meeting with the radiation oncologist at noon, and Scott is to be fitted with his mask just afterward. He's a bit worried about that process, but I think he'll do okay once he gets in there.
With all of our worry about Scott, we also worry about our little friend JJ. Her and her mom Mary are up in NYC. JJ had her operation yesterday which lasted from noon to 10 pm. I happened to be talking to Mary's brother (Noriel whom Stephanie spoke of) when she called him this morning. The doctors got the tumor they went after, but JJ is at a very critical juncture today. She's has tubes everywhere, which is expected. She also is fighting to breathe 100% on her own and the docs are trying to get her blood pressure stable. It drops so the heart rises in rate. It's been a very long couple of days for JJ and her mom. We hope the best for them.
We'll update on the radiation/mask happenings later this evening.
With all of our worry about Scott, we also worry about our little friend JJ. Her and her mom Mary are up in NYC. JJ had her operation yesterday which lasted from noon to 10 pm. I happened to be talking to Mary's brother (Noriel whom Stephanie spoke of) when she called him this morning. The doctors got the tumor they went after, but JJ is at a very critical juncture today. She's has tubes everywhere, which is expected. She also is fighting to breathe 100% on her own and the docs are trying to get her blood pressure stable. It drops so the heart rises in rate. It's been a very long couple of days for JJ and her mom. We hope the best for them.
We'll update on the radiation/mask happenings later this evening.
Saturday, June 2, 2007
A word from mum...
I haven’t posted anything on this blog before and I vowed I never would however fickleness is one of my better attributes.
First I want to say a big thank you to everyone who has supported us over these last 4 months. I know we haven’t sent out as many thank you cards and the like as we perhaps should have done, it has not been for lack of time, just that putting down anything on paper recently, just the words “Scott” and “cancer” in the same sentence have been too much for me to bear. I hope you understand.
But your generosity and kindness have not gone unnoticed and we truly appreciate everyone who has brought a smile to Scotts face during this bloody awful time. And thank you also to Grandmama and Carolyn for remembering Derry through all of this.
I would also like to mention a little girl called Alex from Atlanta. We have never met her but she got to hearing about Scott and bought him a cute little froggy which gives Scott access to a cool site called Webkinz. I have tried writing to her a few times but each time I do I get all choked up and sadly Scotts handwriting has become so shaky, thanks to the chemo, that it is virtually illegible. So Alex, I hope you’re reading this and know how much your kind deed meant to Scott, and all his family. Thank you sunshine!
Also thank you to Stan, Yvonne and Barbara from Teco (Tampa Electric Company) who again didn’t know Scott but knew David. These very kind and generous folks did wonders. First there was the authentic AND SIGNED by the legend himself Mr Ruslan Fedotenko( Hubba hubba! Nyuck nyuck nyuck!) jersey which fits me perfectly, then they made a surprise visit to Scott when he was going through the dreaded methotrexate in hospital. They came loaded with goodies, toys, chocolates and games and Scotts much loved ‘peanut bunny’. There are pictures somewhere of this, I’ll have to track one down and have it posted here. Amazing folks wouldn’t you say?
Oh yeah and one more thank you, sorry, I know this is beginning to sound like the Oscars, but I can’t not say thanks to Noriel Castro (from Cuba!!!). We have got to know Noriel and his beautiful family very well during the last few months, his little 3 year old neice, JJ, has been ravaged by neuroblastoma, if there is such a thing as a bad cancer then neuroblastoma gets the award. Apart from arranging for a goalie stick signed by the whole 2006/7 Lightning team for Scott – look out for it on Ebay - he has just been a big bright light in all of this horror, always smiling and teasing Scott and threatening him with visits from cheer leaders. So thank you Noriel, you are one in a million.
Please continue to support Scott, you’d be amazed at how excited he gets when amongst all the bills there is something with his name on. And for those of you who ask “how can we help Scott” I think we now have an answer …. gift cards for pizza… Pizza Hut, Dominoes, Papa Johns, even Hess. He craves pizza beyond reason, nothing else will suffice. This is caused by very high pulses of steroids; these are given to promote cell growth and appetite. Most of the ‘cancer kids’ crave the same thing, and believe me when your child is critically ill you don’t want to say “No”, however we cant afford to keep doing this. And to those of you in the UK, 8 pounds converted to dollars will pay for his feast plus tip! The financial side of cancer gets you at every turn. So there you have it, a shameless cry for help.
Some have commented on the fact that this is hardly a healthy food to be feeding a child with cancer. Well that is true. However we have been told by doctors and nurses to give him as much high fat food as we can, to not worry about nutrition, just calories. We were even told that the blander the diet the better the child may respond to treatment and certainly no vitamin or mineral supplements as they will interfere with the therapy. One thing I try to do every day is to get Scott to eat a tablespoon of cream, more if I can, just for the high calories and fat. He also has a can of slim fast daily for the vitamins and protein. Fortunately he will eat fruit; though no veggies except tomato soup (does that count?). I try for at least 3 fruits a day; he also eats plenty of yoghurt and nuts so he isn’t doing too badly.
So far Scott hasn’t lost any weight which I am pleased about, in fact at certain times of his steroid pulse he is a bit of a porker! With his pot belly and big fat moon face he is positively lovely.
As for his mental problems, I mean health, he is coping incredibly well. There are certain days in his 3 week cycle when he is in a lot of pain from the vincristine and on these days he lays low, shuts down and hardly says a word to any of us, except regular demands for food. We have about 5 days of this and then the pain subsides and he is pretty much back to the Scott we all know and love. Boredom is a problem to be sure, we live in Florida yet he has to avoid the sun, he has friends but can’t go outside and play with them, he loves to play street hockey and skate but that is a big no-no. He has tickets for Pirates of the Caribbean 3 but there aint no way in hell we can let him sit in a crowded movie theatre until his anc improves. All very frustrating for him and thank goodness for the xbox. But like I said he is dealing with this well and we are very proud of him. Out of the four of us he is most definitely the one who laughs and goofs around the most, he never shuts up!! He still likes to mimic and recently added a Welsh gay man and an English chav to his repertoire. Hopefully we’ll see Poppa soon and he’ll be able to brush up on his Southern speak!
One last thing before I finally shut up, this is a link to one of the very few articles online relating to childhood t-cell ALL, interesting, scary yet still very hopeful reading.
read me
Thanks for listening!
First I want to say a big thank you to everyone who has supported us over these last 4 months. I know we haven’t sent out as many thank you cards and the like as we perhaps should have done, it has not been for lack of time, just that putting down anything on paper recently, just the words “Scott” and “cancer” in the same sentence have been too much for me to bear. I hope you understand.
But your generosity and kindness have not gone unnoticed and we truly appreciate everyone who has brought a smile to Scotts face during this bloody awful time. And thank you also to Grandmama and Carolyn for remembering Derry through all of this.
I would also like to mention a little girl called Alex from Atlanta. We have never met her but she got to hearing about Scott and bought him a cute little froggy which gives Scott access to a cool site called Webkinz. I have tried writing to her a few times but each time I do I get all choked up and sadly Scotts handwriting has become so shaky, thanks to the chemo, that it is virtually illegible. So Alex, I hope you’re reading this and know how much your kind deed meant to Scott, and all his family. Thank you sunshine!
Also thank you to Stan, Yvonne and Barbara from Teco (Tampa Electric Company) who again didn’t know Scott but knew David. These very kind and generous folks did wonders. First there was the authentic AND SIGNED by the legend himself Mr Ruslan Fedotenko( Hubba hubba! Nyuck nyuck nyuck!) jersey which fits me perfectly, then they made a surprise visit to Scott when he was going through the dreaded methotrexate in hospital. They came loaded with goodies, toys, chocolates and games and Scotts much loved ‘peanut bunny’. There are pictures somewhere of this, I’ll have to track one down and have it posted here. Amazing folks wouldn’t you say?
Oh yeah and one more thank you, sorry, I know this is beginning to sound like the Oscars, but I can’t not say thanks to Noriel Castro (from Cuba!!!). We have got to know Noriel and his beautiful family very well during the last few months, his little 3 year old neice, JJ, has been ravaged by neuroblastoma, if there is such a thing as a bad cancer then neuroblastoma gets the award. Apart from arranging for a goalie stick signed by the whole 2006/7 Lightning team for Scott – look out for it on Ebay - he has just been a big bright light in all of this horror, always smiling and teasing Scott and threatening him with visits from cheer leaders. So thank you Noriel, you are one in a million.
Please continue to support Scott, you’d be amazed at how excited he gets when amongst all the bills there is something with his name on. And for those of you who ask “how can we help Scott” I think we now have an answer …. gift cards for pizza… Pizza Hut, Dominoes, Papa Johns, even Hess. He craves pizza beyond reason, nothing else will suffice. This is caused by very high pulses of steroids; these are given to promote cell growth and appetite. Most of the ‘cancer kids’ crave the same thing, and believe me when your child is critically ill you don’t want to say “No”, however we cant afford to keep doing this. And to those of you in the UK, 8 pounds converted to dollars will pay for his feast plus tip! The financial side of cancer gets you at every turn. So there you have it, a shameless cry for help.
Some have commented on the fact that this is hardly a healthy food to be feeding a child with cancer. Well that is true. However we have been told by doctors and nurses to give him as much high fat food as we can, to not worry about nutrition, just calories. We were even told that the blander the diet the better the child may respond to treatment and certainly no vitamin or mineral supplements as they will interfere with the therapy. One thing I try to do every day is to get Scott to eat a tablespoon of cream, more if I can, just for the high calories and fat. He also has a can of slim fast daily for the vitamins and protein. Fortunately he will eat fruit; though no veggies except tomato soup (does that count?). I try for at least 3 fruits a day; he also eats plenty of yoghurt and nuts so he isn’t doing too badly.
So far Scott hasn’t lost any weight which I am pleased about, in fact at certain times of his steroid pulse he is a bit of a porker! With his pot belly and big fat moon face he is positively lovely.
As for his mental problems, I mean health, he is coping incredibly well. There are certain days in his 3 week cycle when he is in a lot of pain from the vincristine and on these days he lays low, shuts down and hardly says a word to any of us, except regular demands for food. We have about 5 days of this and then the pain subsides and he is pretty much back to the Scott we all know and love. Boredom is a problem to be sure, we live in Florida yet he has to avoid the sun, he has friends but can’t go outside and play with them, he loves to play street hockey and skate but that is a big no-no. He has tickets for Pirates of the Caribbean 3 but there aint no way in hell we can let him sit in a crowded movie theatre until his anc improves. All very frustrating for him and thank goodness for the xbox. But like I said he is dealing with this well and we are very proud of him. Out of the four of us he is most definitely the one who laughs and goofs around the most, he never shuts up!! He still likes to mimic and recently added a Welsh gay man and an English chav to his repertoire. Hopefully we’ll see Poppa soon and he’ll be able to brush up on his Southern speak!
One last thing before I finally shut up, this is a link to one of the very few articles online relating to childhood t-cell ALL, interesting, scary yet still very hopeful reading.
read me
Thanks for listening!
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