"Well, Clarice - have the lambs stopped screaming?"
Scott & Sunny
Monday, June 18, 2007
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!
Thursday, May 31, 2007
Delay
We've experienced Scott's first treatment delay at clinic this morning. Scott's counts haven't bounced back enough. His ANC is only back up to 540, and has to be a minimum 750 for him to receive Vincristine, Doxorubicin and start the round of steroids and 6mp. So, what is truly treatment week 19 is now pushed back to next week, and every treatment from here forward pushes back one week. This includes radiation, which was scheduled to start 6/21, but will not start now until 6/28. That stretches the 108 weeks to 109.
However, his leg shots are not count-dependent. He got the next round of them this morning. That makes 13 he's gotten. 7 more to go. I'm going to try to talk him into letting me film those once, just to post up and make folks realize what happens. I don't know if he'll go along with that, or if Stephanie will either.
More later after I get home and we sort through things. I need to make sure all this is accurate.
However, his leg shots are not count-dependent. He got the next round of them this morning. That makes 13 he's gotten. 7 more to go. I'm going to try to talk him into letting me film those once, just to post up and make folks realize what happens. I don't know if he'll go along with that, or if Stephanie will either.
More later after I get home and we sort through things. I need to make sure all this is accurate.
Monday, May 28, 2007
Through the weekend
We're through the low-count weekend with no large issues. Scott managed to stay mostly entertained at home. He did have a visit from Katherine from his school, but that was about all he could handle. Or more accurately, all we were willing to chance from an exposure angle.
We did make a trade-in visit to Gamestop. This led to a decent size credit on their gaming card, so a few new games helped entertain while he couldn't get out much. Derry is affected at these times as well. He is hesitant to go out with the neighborhood kids when Scott can't. Sometimes it is easy to not see the whole effect this has on him. He's done brilliantly with Scott through this so far. They have the normal brotherly verbal jousts from time to time, but mostly have gotten on very well.
Scott's out of the house time this weekend consisted of the gamestop trip and a ride to the movie store and to get some food today. The highlight of the ride being a ride-through car wash, which he got a bang out of. It is the small things that seem to keep his spirits up.
We've notice it seems his hair is growing, but very thinly. I don't know if it is actually coming back, or just my imagination. Maybe we can will it back asap.
Today was day 1 of the wonderful "3 days with no drugs" that only comes at the tail-end of each 3-week cycle. Scott cherishes those three days. Can't blame him for that at all. Now comes the heavy clinic week, and the beginning of the next pulse of steroids. Also the next dose of Vincristine which will ultimatley bring the several days of aches in his joints. This Thursday will begin week 19. We're now 124 days into Scott's protocal.
That seems like a long time, but we're all still in shock mode most of the time. A number of folks told us at the outset we'd find a "new normal". I don't think any of this should be normal for any of us. It affects all of us in many ways. Just have to keep pushing along and taking care of keeping on track, and do everything possible to not let it get the best of us.
Off to check Scott and see if he's asleep. He insists one of us stay awake until he's out for the night, which is hard sometimes. He has trouble getting comfortable and to sleep a lot of nights. How he knows we stayed up unti he went to sleep is beyond me, but until he does, he calls for one of us then says "see you in a few minutes". It's actually nice when I think about it. He has a sense of humor about lots of things, which is a very good thing. Scott has always been upbeat, comical and talkative. He is still that way, other than the group of days the drugs make him miserable.
We did make a trade-in visit to Gamestop. This led to a decent size credit on their gaming card, so a few new games helped entertain while he couldn't get out much. Derry is affected at these times as well. He is hesitant to go out with the neighborhood kids when Scott can't. Sometimes it is easy to not see the whole effect this has on him. He's done brilliantly with Scott through this so far. They have the normal brotherly verbal jousts from time to time, but mostly have gotten on very well.
Scott's out of the house time this weekend consisted of the gamestop trip and a ride to the movie store and to get some food today. The highlight of the ride being a ride-through car wash, which he got a bang out of. It is the small things that seem to keep his spirits up.
We've notice it seems his hair is growing, but very thinly. I don't know if it is actually coming back, or just my imagination. Maybe we can will it back asap.
Today was day 1 of the wonderful "3 days with no drugs" that only comes at the tail-end of each 3-week cycle. Scott cherishes those three days. Can't blame him for that at all. Now comes the heavy clinic week, and the beginning of the next pulse of steroids. Also the next dose of Vincristine which will ultimatley bring the several days of aches in his joints. This Thursday will begin week 19. We're now 124 days into Scott's protocal.
That seems like a long time, but we're all still in shock mode most of the time. A number of folks told us at the outset we'd find a "new normal". I don't think any of this should be normal for any of us. It affects all of us in many ways. Just have to keep pushing along and taking care of keeping on track, and do everything possible to not let it get the best of us.
Off to check Scott and see if he's asleep. He insists one of us stay awake until he's out for the night, which is hard sometimes. He has trouble getting comfortable and to sleep a lot of nights. How he knows we stayed up unti he went to sleep is beyond me, but until he does, he calls for one of us then says "see you in a few minutes". It's actually nice when I think about it. He has a sense of humor about lots of things, which is a very good thing. Scott has always been upbeat, comical and talkative. He is still that way, other than the group of days the drugs make him miserable.
Friday, May 25, 2007
12 down now
Clinic visit yesterday saw Scott get the 12th of 20 legs shots. He does rather well with the shots now, which is a double-edged sword. Fine that they aren't as traumatic as the beginning, but exactly why in the world should simultaneous 2-inch needles into a 10-year-old's legs NOT be grossly traumatic?
Perspective on everything blurs more as the days pass. The words "good/bad" or "positive/negative" are not as simple to define as before Scott was diagnosed. It's a struggle no one should endure. Not the child. Not the parents. Not the families.
Coming into the weekend, the boys were hoping to visit the movie theater sometime to catch one of the new summer movies. A sub-200 ANC from yesterday's blood work has cancelled such a trip. No way can Scott sit in a jammed theatre for 2+ hours just awaiting an influx of germs from someone. So it will be a quiet weekend at the house. He is supposed to have a visit from Katherine, one of his school mates today. She said she's missed Scott since he's been out of school. Hopefully they'll have a good time and cheer him up. He's had a headache for 2 days now, but no fever. Anytime a pain or sneeze or anything comes up, you just shudder with worry.
Scott saw JJ yesterday at the clinic. We discovered her journey to NYC for her operation was delayed. She's now due up late next week, with her operation being early the following week. Scott and JJ played around in the clinic most of the morning. Stephanie said both seemed in good spirits. We have some pictures, including Scott holding a 2-week-old that makes him look like a grossly-underaged new dad. Just have to get them online tonight or over the weekend.
Off for a (hopefully) nice, quiet 3-day weekend.
Perspective on everything blurs more as the days pass. The words "good/bad" or "positive/negative" are not as simple to define as before Scott was diagnosed. It's a struggle no one should endure. Not the child. Not the parents. Not the families.
Coming into the weekend, the boys were hoping to visit the movie theater sometime to catch one of the new summer movies. A sub-200 ANC from yesterday's blood work has cancelled such a trip. No way can Scott sit in a jammed theatre for 2+ hours just awaiting an influx of germs from someone. So it will be a quiet weekend at the house. He is supposed to have a visit from Katherine, one of his school mates today. She said she's missed Scott since he's been out of school. Hopefully they'll have a good time and cheer him up. He's had a headache for 2 days now, but no fever. Anytime a pain or sneeze or anything comes up, you just shudder with worry.
Scott saw JJ yesterday at the clinic. We discovered her journey to NYC for her operation was delayed. She's now due up late next week, with her operation being early the following week. Scott and JJ played around in the clinic most of the morning. Stephanie said both seemed in good spirits. We have some pictures, including Scott holding a 2-week-old that makes him look like a grossly-underaged new dad. Just have to get them online tonight or over the weekend.
Off for a (hopefully) nice, quiet 3-day weekend.
Monday, May 21, 2007
Update on the last week
Quite a lot has went on since a week ago. Early last week, Scott was having a very bad time with sore joints. Sore jaw. Sore legs. Sore feet. It all is related to the Vincristine he gets every 3rd week, which has a delayed effect. It is hard to believe he was bouncing around playing on the Wii the weekend of his shopping spree, then pretty much just lying around for several days.
He was doing well enough to go the the school spring show on Wednesday, which was somewhat of a talent show. We didn't realize until we got there the kids dedicated the show to Scott. He had a good time watching some of his friends up on the stage. Several of his pals stopped by to speak to him a few minutes. Brandon has been making his regular visits by the house, and that really makes Scott happy. Brandon should get a big, huge thank you as well. It seems he was out washing cars and doing odd things for folks in the neighborhood last weekend - just so he could give Scott the money. What a great kid! He came by this evening to spend some time with Scott in the pool.
Then Thursday's clinic visit came. Nothing but blood work and leg shots on that visit. His bloodwork was in good shape, much better than 1 week after the nasty big yellow bags. So that is a good thing to see going forward. Also he's past the halfway mark with the leg shots. That was week 11 of 20. No reactions yet, which we are grateful for, as you hear some bad things about reactions kids have to those shots.
Then came Saturday. I was dreading Saturday. Stephanie was dreading Saturday. Scott couldn't wait until Saturday. All this because we had a skating session scheduled for Scott with Coach Cindy. I must say, I was sort of hoping Scott's feet would still be sore enough to make him delay the session a week. Not because we don't want him having fun, but just out of sheer fear of him going on the ice. So he got suited up in all his hockey gear and off we went. He gets down at the ice edge and stepped on quite cautiously........then just took off across the ice. Cindy was saying he seemed to remember everything, and did remarkably well considering he hasn't put his skates on for 4 months. Of course he hasn't much stamina and strength, but he did great and didn't crash and scare us to death. We believe it did him a great deal of good just to get out there.
It probably did us a great deal of good just to see him out there as well. So, we continue on for now. Taking things day by day. We also are thinking of little JJ and her mom Mary, who flew up to NYC this weekend for admission to Sloan-Kettering Cancer Center for a very critical operation to remove a tumor in her chest. Everyone is hoping for a great success for JJ.
He was doing well enough to go the the school spring show on Wednesday, which was somewhat of a talent show. We didn't realize until we got there the kids dedicated the show to Scott. He had a good time watching some of his friends up on the stage. Several of his pals stopped by to speak to him a few minutes. Brandon has been making his regular visits by the house, and that really makes Scott happy. Brandon should get a big, huge thank you as well. It seems he was out washing cars and doing odd things for folks in the neighborhood last weekend - just so he could give Scott the money. What a great kid! He came by this evening to spend some time with Scott in the pool.
Then Thursday's clinic visit came. Nothing but blood work and leg shots on that visit. His bloodwork was in good shape, much better than 1 week after the nasty big yellow bags. So that is a good thing to see going forward. Also he's past the halfway mark with the leg shots. That was week 11 of 20. No reactions yet, which we are grateful for, as you hear some bad things about reactions kids have to those shots.
Then came Saturday. I was dreading Saturday. Stephanie was dreading Saturday. Scott couldn't wait until Saturday. All this because we had a skating session scheduled for Scott with Coach Cindy. I must say, I was sort of hoping Scott's feet would still be sore enough to make him delay the session a week. Not because we don't want him having fun, but just out of sheer fear of him going on the ice. So he got suited up in all his hockey gear and off we went. He gets down at the ice edge and stepped on quite cautiously........then just took off across the ice. Cindy was saying he seemed to remember everything, and did remarkably well considering he hasn't put his skates on for 4 months. Of course he hasn't much stamina and strength, but he did great and didn't crash and scare us to death. We believe it did him a great deal of good just to get out there.
It probably did us a great deal of good just to see him out there as well. So, we continue on for now. Taking things day by day. We also are thinking of little JJ and her mom Mary, who flew up to NYC this weekend for admission to Sloan-Kettering Cancer Center for a very critical operation to remove a tumor in her chest. Everyone is hoping for a great success for JJ.
Monday, May 14, 2007
Shopping Spree completed
Well, we finally made it over to the Brandon Toys-R-Us Saturday about noon. We had decided to not worry with going prior to the store opening, although we do appreciate that generous offer by Barry, the Manager. When we got to the store, it was overrun with Star Wars characters. Seems they were having a Star Wars event from Noon-3:00. That all turned out very well, as Scott was met by Barry and given two Stormtroopers as shopping guards for his time in the store. Barry also had an additional surprise for Scott, as he had a big Toys-R-Us shopping bag with a couple of Wii games and Star Wars stuff packed in it - an additional gift to Scott from the store. So Scott was well ahead of plan before even shopping.
Scott was able to take his time, aided by his personal guards and Barry. Matthew, Sonny and Sarah also get a big thank you from us for all of their help. A great group of people working in that store. They in fact had a Wii stashed away in the back and held for Scott, and Scott instantly set off shopping for games with for the system. We were in the store for around 90 minutes, never rushed by anyone at anytime. Barry even offered the store breakroom up for Scott to have a rest if necessary, as Scott was getting a bit tired after a while. He filled his buggy and did a good job of making his $500 target, as his gift card now had 3 bucks and some change left on it.
We also want to give another BIG thank you to Mr. Wallace, the counselor at Mintz Elementary. Without Mr. Wallace, none of this would have happened. He is a very nice man, and actually has us considering placing Scott back in Mintz this fall to go through 5th grade again. It may be a better transition back into school. It would be a great comfort knowing someone like Mr. Wallace is there.
Scott's friend Brandon from school has also been by several times over the last couple of weeks. Brandon's visits have lifted Scott's spirits, and Brandon came by with a brand new Bucs cap today for Scott! Thanks a bunch to Brandon!
On top of all of that, we had another box of cookies show up on the front step! Can't ever complain about mysteriously appearing cookies. Cookies are good. Mmmm good.
We've put 23 more pictures up on the picture page. Some from the hospital, some from here and some from the visit to Toys-R-Us.
Scott actually had me take off to Border's later in the day. Seems he had some cash left on his gift card from there. He actually went and used it to buy Stephanie a Mother's Day gift - a "Little Britain" dvd season package (those across the pond will know what that is). Through all this, he's still got as big a heart as ever.
Scott was able to take his time, aided by his personal guards and Barry. Matthew, Sonny and Sarah also get a big thank you from us for all of their help. A great group of people working in that store. They in fact had a Wii stashed away in the back and held for Scott, and Scott instantly set off shopping for games with for the system. We were in the store for around 90 minutes, never rushed by anyone at anytime. Barry even offered the store breakroom up for Scott to have a rest if necessary, as Scott was getting a bit tired after a while. He filled his buggy and did a good job of making his $500 target, as his gift card now had 3 bucks and some change left on it.
We also want to give another BIG thank you to Mr. Wallace, the counselor at Mintz Elementary. Without Mr. Wallace, none of this would have happened. He is a very nice man, and actually has us considering placing Scott back in Mintz this fall to go through 5th grade again. It may be a better transition back into school. It would be a great comfort knowing someone like Mr. Wallace is there.
Scott's friend Brandon from school has also been by several times over the last couple of weeks. Brandon's visits have lifted Scott's spirits, and Brandon came by with a brand new Bucs cap today for Scott! Thanks a bunch to Brandon!
On top of all of that, we had another box of cookies show up on the front step! Can't ever complain about mysteriously appearing cookies. Cookies are good. Mmmm good.
We've put 23 more pictures up on the picture page. Some from the hospital, some from here and some from the visit to Toys-R-Us.
Scott actually had me take off to Border's later in the day. Seems he had some cash left on his gift card from there. He actually went and used it to buy Stephanie a Mother's Day gift - a "Little Britain" dvd season package (those across the pond will know what that is). Through all this, he's still got as big a heart as ever.
Friday, May 11, 2007
Chemo in a cluster
Scott had good bloodwork yesterday. But that was about all that was good for his clinic visit. He was in a real wreck of a mood. Very nervous all morning. Got sick right when he took his first ever Orapred ODT after having blood drawn. Not a good sign. Then on with the IV Vincristine, Doxorubicin and leg shots. Just and endless stream of stuff being shoved into his port.
After the legs shots, he seem to cheer up a bit and start making jokes. It was a very long day for him, as he had to cram all of that in, then get two more loads of steroids and a dose of 6mp before bed. A whopping load of poison all in the name of treatment. It is staggering. You think you get used to what is going to happen, or maybe settle on the fact it is "routine", but it just does not work that way at all. Luckily he's in a much better mood today. And the Orapred ODT seems to have been accepted by him, as long as he lets them melt away under his tongue, safely away from tastebuds.
On top of all that, he had IV antibiotics pushed in so he could make his dentist visit just after the clinic.
I hate to think of the total amount of chemo his body will take during this course. If you do think about it, you're mind will become mush. But he's hanging in there.
It seems, dependent on his feeling and mood tomorrow, we will be making his visit to Toys R Us in the morning. Stephanie has spoke with the manager, and he's somehow convinced one of his managers to get a Wii in the store and marked for Scott. Hope that doesn't cause a riot amongst folks in search of one.
Also, being Mother's Day weekend, we must bring attention to the Thanks Mom Marrow Drive, which is organized by the National Marrow Donor Program. If you feel you can committ to being on the list, please do so. One never knows when they may be the perfect match for someone's chance at survival. Stephanie actually solicited Michelle Malkin to tout the drive on her web-log, which gets several million hits per month. Michelle generously did, it was posted by her about 9 this morning. Stephanie even got a reply email from Michelle telling her she'd be glad to, and quoted Stephanie on the entry. We have a star!
The National Registry needs as many folks listed as possible. Folks are diagnosed endlessly, and many require bone marrow transplants. The day Scott was diagnosed, we thought it was bizarre that 3 kids came in the same night as new cancer patients at St. Joe's. This week seems to have been a very sad one. St. Joe's has had 17 brand new cases just this week. That's staggering and very depressing.
Tomorrow also marks a milestone for Stephanie - it will be the 6 month mark since she quit smoking. That is a wonderful feat, especially considering she was only about 8 weeks in when Scott got sick. We're all very proud of her, and we've told her she can gladly start smoking again when Scott approves of it.
And of course Sunday is Mother's Day here in the States. With all of this going on, it makes one think about where we may be without moms. It makes me think of the things my mom has done through the years of grief I gave her. It makes me think of Steph's mom, and how she became a savior in our infamous "deportation fiasco" of 2004. As well as Steph's grandmother, who is a wonderful woman that helped Stephanie mentally through that time in a major way. And Stephanie's Auntie 'Mo - a mom herself - who helped Stephanie, Scott and Derry during that time just as if they were her own. All were literally shelters in a storm. Makes me think of my "little sister" - who is actually my niece, who just became a mom last month. And also makes me think of the mom's going through sheer hell with sick children at the hospital. Especially Mary, who is about to go to NYC with little JJ for a very critical operation.
No mom should have to see a child through this struggle, but far too many do.
After the legs shots, he seem to cheer up a bit and start making jokes. It was a very long day for him, as he had to cram all of that in, then get two more loads of steroids and a dose of 6mp before bed. A whopping load of poison all in the name of treatment. It is staggering. You think you get used to what is going to happen, or maybe settle on the fact it is "routine", but it just does not work that way at all. Luckily he's in a much better mood today. And the Orapred ODT seems to have been accepted by him, as long as he lets them melt away under his tongue, safely away from tastebuds.
On top of all that, he had IV antibiotics pushed in so he could make his dentist visit just after the clinic.
I hate to think of the total amount of chemo his body will take during this course. If you do think about it, you're mind will become mush. But he's hanging in there.
It seems, dependent on his feeling and mood tomorrow, we will be making his visit to Toys R Us in the morning. Stephanie has spoke with the manager, and he's somehow convinced one of his managers to get a Wii in the store and marked for Scott. Hope that doesn't cause a riot amongst folks in search of one.
Also, being Mother's Day weekend, we must bring attention to the Thanks Mom Marrow Drive, which is organized by the National Marrow Donor Program. If you feel you can committ to being on the list, please do so. One never knows when they may be the perfect match for someone's chance at survival. Stephanie actually solicited Michelle Malkin to tout the drive on her web-log, which gets several million hits per month. Michelle generously did, it was posted by her about 9 this morning. Stephanie even got a reply email from Michelle telling her she'd be glad to, and quoted Stephanie on the entry. We have a star!
The National Registry needs as many folks listed as possible. Folks are diagnosed endlessly, and many require bone marrow transplants. The day Scott was diagnosed, we thought it was bizarre that 3 kids came in the same night as new cancer patients at St. Joe's. This week seems to have been a very sad one. St. Joe's has had 17 brand new cases just this week. That's staggering and very depressing.
Tomorrow also marks a milestone for Stephanie - it will be the 6 month mark since she quit smoking. That is a wonderful feat, especially considering she was only about 8 weeks in when Scott got sick. We're all very proud of her, and we've told her she can gladly start smoking again when Scott approves of it.
And of course Sunday is Mother's Day here in the States. With all of this going on, it makes one think about where we may be without moms. It makes me think of the things my mom has done through the years of grief I gave her. It makes me think of Steph's mom, and how she became a savior in our infamous "deportation fiasco" of 2004. As well as Steph's grandmother, who is a wonderful woman that helped Stephanie mentally through that time in a major way. And Stephanie's Auntie 'Mo - a mom herself - who helped Stephanie, Scott and Derry during that time just as if they were her own. All were literally shelters in a storm. Makes me think of my "little sister" - who is actually my niece, who just became a mom last month. And also makes me think of the mom's going through sheer hell with sick children at the hospital. Especially Mary, who is about to go to NYC with little JJ for a very critical operation.
No mom should have to see a child through this struggle, but far too many do.
Sunday, May 6, 2007
Driving for Donors
Please take a couple of minutes to go to this site and read about Pat. Pat is a kid being treated at St. Joe's as well. He's an amazing little kid. He and his mom are about to take off on a long road trip in an RV, rounding up marrow donors for the National Marrow Registry.
Listing as a donor does require a committment. If you are found to be a match, time is of the essence with the transplant process, which is some children's only hope of survival.
Those of you over 61, sorry, you're too old!!
So consider the hope you may give some person you don't even know. It could be their only shot.
We're off to Border's and Blockbuster now. Mr. Wallace came by again on Friday, with some gift cards to those places that were donated from parents at the school.
Listing as a donor does require a committment. If you are found to be a match, time is of the essence with the transplant process, which is some children's only hope of survival.
Those of you over 61, sorry, you're too old!!
So consider the hope you may give some person you don't even know. It could be their only shot.
We're off to Border's and Blockbuster now. Mr. Wallace came by again on Friday, with some gift cards to those places that were donated from parents at the school.
Thursday, May 3, 2007
Clinic Day
Stephanie and Scott are at the clinic this morning. He's had his bloodwork, and needs no transfusions. His ANC is quite low - 347 - which isn't surprising considering he's only 14 days past the last Hi-dose being administered. Hopefully his body bounces back over the next week, and especially when the next round of steroids begins in one week. This will be the first time he's had the high level of steroids without the hi-dose chemo. It will be interesting to see how things progress, as this will be the routine of treatment for the remainder of his scheduled protocol.
Stephanie also researched and found an ODT (Orally Disintegrating Tablet) for of Scott's steroid. The docs have discussed it, as they hadn't reviewed it to date (it was just FDA approved last year). They've okayed it for use in his treatment to replace the normal tablets and liquid form. The clinic nurses are checking to make sure the insurance covers that form. Hopefully they do, that will handle a big worry we have going into next week.
Dr. Wynn has visited with him this morning, and okayed swimming at home, as long as the pool chemicals are at proper levels. He also okayed a bit of ice skating (which honestly scares the living hell out of me). We'll have to see about that one. Have to try to find some very "non-crowded" ice time for sure. No way will we toss him out there during the normal "public" skates. There are a couple of instructors that do one-on-one for reasonable rates. That may be the best approach. The biggest worry is Scott's all-out skating approach, as he never cared if he fell or crashed into boards before. Hopefully there's a bit of fear about that in him at this point.
Still not been on the Toys-R-Us visit just yet. Probably will do that on a weekend morning. Scott desires a Nintendo Wii. They are still hard to come by down here, but the store manager is searching. Mr. Wallace returned again yesterday to the house, bringing Scott some cards made by schoolmates that do the Morning Show at his school, as well as the Student Council -which Scott had just been named to a week or so prior to his diagnosis.
And if you have a spare birthday card lying around, drop one to this kid named Shane. Two years into his treatment for ALL, Shane relapsed and had to start over at Page 1. Now all he wants is to try and get as many birthdays cards as possible. I think the 350 MILLION is a typo on the page, I think it is supposed to be 350,000. Regardless, any card added to his mailbox will hopefully make a bright spot in his day. He certainly needs it.
Stephanie also researched and found an ODT (Orally Disintegrating Tablet) for of Scott's steroid. The docs have discussed it, as they hadn't reviewed it to date (it was just FDA approved last year). They've okayed it for use in his treatment to replace the normal tablets and liquid form. The clinic nurses are checking to make sure the insurance covers that form. Hopefully they do, that will handle a big worry we have going into next week.
Dr. Wynn has visited with him this morning, and okayed swimming at home, as long as the pool chemicals are at proper levels. He also okayed a bit of ice skating (which honestly scares the living hell out of me). We'll have to see about that one. Have to try to find some very "non-crowded" ice time for sure. No way will we toss him out there during the normal "public" skates. There are a couple of instructors that do one-on-one for reasonable rates. That may be the best approach. The biggest worry is Scott's all-out skating approach, as he never cared if he fell or crashed into boards before. Hopefully there's a bit of fear about that in him at this point.
Still not been on the Toys-R-Us visit just yet. Probably will do that on a weekend morning. Scott desires a Nintendo Wii. They are still hard to come by down here, but the store manager is searching. Mr. Wallace returned again yesterday to the house, bringing Scott some cards made by schoolmates that do the Morning Show at his school, as well as the Student Council -which Scott had just been named to a week or so prior to his diagnosis.
And if you have a spare birthday card lying around, drop one to this kid named Shane. Two years into his treatment for ALL, Shane relapsed and had to start over at Page 1. Now all he wants is to try and get as many birthdays cards as possible. I think the 350 MILLION is a typo on the page, I think it is supposed to be 350,000. Regardless, any card added to his mailbox will hopefully make a bright spot in his day. He certainly needs it.
Subscribe to:
Posts (Atom)
