Today came with Scott in a fog early this morning. Seems he took a bit to wake up. I wonder if he lies there each time he wakes, wondering if the nightmare has ended. Lots of sighs when we ask him things. Lots of frustrations when we get him up.
After he was awake, we did get him to make some laps around the hall each time he got up to use the bathroom. He walks on his feet properly now, but tends to gather a bit of steam as he goes. We have to get him slow down regularly to keep him from chancing a fall, or chancing us not being able to keep up with his IV pole. He did stop and say hi to Morlene, the cleaning lady that works on the floor, when she prompted him.
It is a hard thing to watch your child struggle so hard to do things that were not even a thought 2 weeks ago. He actually told Stephanie today "I'm trying." After we finished walking the first time, I told him I was quite proud. Then ask him (fully expecting no response) to give me a hi-five - and out came his hand, slowly and gingerly to do just that. Of course I started to get all weepy (Stephanie didn't help by telling him 'you're gonna make him cry Scott). As Stephanie said, that was probably the best hi-five I've ever had.
He does seem to try and talk more when he's up walking. I've no idea if there is anything physically that does that, or if he just feels better when he's up. He does look around in wonder a lot, but he also knows which room is his. We just try to understand what he does and does not recognize. It is very hard. He struggles greatly, and you just have to wonder if you've pushed too much and need to stop.
He had some cookies show up from Sara, who works with me. While walking, he started talking and just said "what kind of cookies?" You never know what may spark a reaction. Thanks for the sweets Sara, and the video in the mailbox - which Derry performed a "quality test" on tonight. He said he had to make sure it worked.
Another huge thank you to Susan. She arrived with the usual coffee for Steph, a gaggle of wrestling videos and another huge sack of food - which I promptly attempted to eat the entire thing. It seems I "stress-eat" and Stephanie "stress-starves". I can't say enough about Susan. I think I've mentioned here before that we met her sadly at the hospital when Scott first got sick. Her daughter was admitted and diagnosed with lymphoma the same day as Scott was diagnosed with leukemia. Mom's of kids with cancer tend to bond in a way that can't be explained.
And continued thanks to Scott's Chemo Angels. You guys are great.
As to where we stand - Scott's chemo is on hold for at least another couple days or more. We also spoke with the doctors today, and he'll certainly be in the hospital until at least Tuesday. Going to give the Lovimax a few days to work and do another scan for comparison. So a few days to just focus on him improving, without any drugs to get in his way. Oddly, we were scheduled to be over at Disney this weekend. Not exactly the room away from home we were counting on.
Scott & Sunny
Friday, August 31, 2007
Thursday, August 30, 2007
Chris Jericho
I hope I am not seeing too much into small things but I do believe we have made a little progress today.
Today we managed to give Scott a bath and he also walked around the ward 3 times. He is still extremely confused and 'lost', I dont think he has any idea where he is, and more alarmingly Im not entirely sure he knows who David and Derry are. He doesnt seem quite as scared as he did yesterday but still his body tightens when he has a doctor or nurse close to him. He has been awake a little longer today than of past and has been watching a WWE ladder match dvd which he definately was following, to what extent Im not sure, but he did blurt out "Chris Jericho" when he saw him on the screen. This happened when the psychologist was in the room and was obviously seen as a good sign. If Mr Wallace is reading this, and Im sure he is, please pass this on to Coach Guerrero, and maybe he can pass it on to our new hero, Mr Chris Jericho.
He has spoken a little and most of what he said was within context and made sense. When he was in the bath he asked, "can I come out now?" and when asked a simple question he will sometimes reply with a nod, a "yes" or an "ok". On a couple of occassions he tried to talk but the words just wouldnt come, it is unbelievably painful to watch. He can also make eye contact which he wasnt doing very well a couple of days ago.
Scott still wont eat or drink but nobody seems concerned, he is being given TPN through his port but it cant sustain him for long.
This evening I seemed to get a big breakthrough although now Im not so sure what to make of it. He started smiling at me, big huge grins, then he laughed and giggled and was kind of like Scott but kind of babyish too, we were goofing about, he said quite clearly "mum, you're crazy" cos I was laughing and being silly and it seemed like 'wow, he's back' but then all of a sudden his face changed and he said "don't do that" and he turned away from me. I reported all this to the nurse ofcourse and she told me to expect the weird and the wonderful but that right now all words and reactions were a good thing.
We never leave him alone, not even for a minute, we give him peace but when we feel he is up to it we try to stimulate him in whatever way we can. We have told him what has happened and that each day will be a step closer to Scott being Scott again. I do think he understands most if not all of what is being said to him. Most importantly he is getting lots and lots of hugs and kisses.
We had two visitors today, Benji and his "staff" and Darren Stage, who is Scott's best friends dad. Scott wasnt too aware of Benji being there which was very sad but at the same time he didnt freak out about it either. Benji just hopped up on the bed next to Scott and rested his head next to Scott. Hopefully next time we see Benji, Scotty will be more aware and can get a big doggy hug and a kiss. Darren was great and came bearing gifts and a huge singing balloon, it was good to see him, maybe in a day or so he will bring Brandon with him and the boys will be able to chat a little.
Oh yeah and we had one more visitor. A doctor from infectious diseases! Damn how much more do they expect us to take??!! He was a pretty nice guy actually, which was contrary to what I had been told to expect, he checked Scott over and he will be running all manner of different tests, he will also be giving Scott a lumbar puncture to check that the spinal fluid is ok. This is all being done as Scott it STILL having low grade fevers and they are not convinced that this is because of the clot. So he'll be checked out good and proper for all manner of weird and wonderful things. Please, please, please, no more, we cant take being told he has ebola, malaria or even cat scratch fever!
Chemo is currently on hold as it is possible that one or other of the chemo's caused this stroke, so obviously that is a concern. However it is most likely come from the leg shots which have been completed. They are also checking genetics as we have a history of clots and strokes on my side of the family. Im sure it hasnt come from me though as I am perfect.
Please please keep Scotty close to your hearts and lets all hope, and for those of you who pray, then pray, that tomorrow is better than today and the day after that will be better than the day before, and yesterday will be worse than tomorrow.
I am not asking for anything for Scott but should anyone wish to send him a gift, a magazine or a card then maybe we should stick with WWE as this seemed to spark him earlier. So anything wrestling related would be appreciated Im sure.
Love to you all and thanks for checking in.
Today we managed to give Scott a bath and he also walked around the ward 3 times. He is still extremely confused and 'lost', I dont think he has any idea where he is, and more alarmingly Im not entirely sure he knows who David and Derry are. He doesnt seem quite as scared as he did yesterday but still his body tightens when he has a doctor or nurse close to him. He has been awake a little longer today than of past and has been watching a WWE ladder match dvd which he definately was following, to what extent Im not sure, but he did blurt out "Chris Jericho" when he saw him on the screen. This happened when the psychologist was in the room and was obviously seen as a good sign. If Mr Wallace is reading this, and Im sure he is, please pass this on to Coach Guerrero, and maybe he can pass it on to our new hero, Mr Chris Jericho.
He has spoken a little and most of what he said was within context and made sense. When he was in the bath he asked, "can I come out now?" and when asked a simple question he will sometimes reply with a nod, a "yes" or an "ok". On a couple of occassions he tried to talk but the words just wouldnt come, it is unbelievably painful to watch. He can also make eye contact which he wasnt doing very well a couple of days ago.
Scott still wont eat or drink but nobody seems concerned, he is being given TPN through his port but it cant sustain him for long.
This evening I seemed to get a big breakthrough although now Im not so sure what to make of it. He started smiling at me, big huge grins, then he laughed and giggled and was kind of like Scott but kind of babyish too, we were goofing about, he said quite clearly "mum, you're crazy" cos I was laughing and being silly and it seemed like 'wow, he's back' but then all of a sudden his face changed and he said "don't do that" and he turned away from me. I reported all this to the nurse ofcourse and she told me to expect the weird and the wonderful but that right now all words and reactions were a good thing.
We never leave him alone, not even for a minute, we give him peace but when we feel he is up to it we try to stimulate him in whatever way we can. We have told him what has happened and that each day will be a step closer to Scott being Scott again. I do think he understands most if not all of what is being said to him. Most importantly he is getting lots and lots of hugs and kisses.
We had two visitors today, Benji and his "staff" and Darren Stage, who is Scott's best friends dad. Scott wasnt too aware of Benji being there which was very sad but at the same time he didnt freak out about it either. Benji just hopped up on the bed next to Scott and rested his head next to Scott. Hopefully next time we see Benji, Scotty will be more aware and can get a big doggy hug and a kiss. Darren was great and came bearing gifts and a huge singing balloon, it was good to see him, maybe in a day or so he will bring Brandon with him and the boys will be able to chat a little.
Oh yeah and we had one more visitor. A doctor from infectious diseases! Damn how much more do they expect us to take??!! He was a pretty nice guy actually, which was contrary to what I had been told to expect, he checked Scott over and he will be running all manner of different tests, he will also be giving Scott a lumbar puncture to check that the spinal fluid is ok. This is all being done as Scott it STILL having low grade fevers and they are not convinced that this is because of the clot. So he'll be checked out good and proper for all manner of weird and wonderful things. Please, please, please, no more, we cant take being told he has ebola, malaria or even cat scratch fever!
Chemo is currently on hold as it is possible that one or other of the chemo's caused this stroke, so obviously that is a concern. However it is most likely come from the leg shots which have been completed. They are also checking genetics as we have a history of clots and strokes on my side of the family. Im sure it hasnt come from me though as I am perfect.
Please please keep Scotty close to your hearts and lets all hope, and for those of you who pray, then pray, that tomorrow is better than today and the day after that will be better than the day before, and yesterday will be worse than tomorrow.
I am not asking for anything for Scott but should anyone wish to send him a gift, a magazine or a card then maybe we should stick with WWE as this seemed to spark him earlier. So anything wrestling related would be appreciated Im sure.
Love to you all and thanks for checking in.
We're just over a day into Scott's Lovimax (sp?) treatments. That is the blood thinner they are using. We got Scott in the bath late this morning. It was quite a job, as Scott seemed real apprehensive to leave the room. It is very sad to experience on our end. We can only imagine how sad it is for Scott. Several times he's teared up while we're talking to him.
He has talked some. Very sporadic though. Derry had brought in a wrestling video - (we had him at hospital today, both for Stephanie's benefit and to see if he could spark something in Scott) - that came in the mail. Prior to the bath, they had in on the TV. While we had Scott in the tub room, he was sitting and I was trying to talk with him. He started trying to put words out. They came slowly, one at a time, but repeated every time. He just said "can.....can we....can we put.....can we put on.....can we put on some......" then he couldn't find the word. I asked him a few times 'Can we put on some what?". He'd sigh, not being able to find it. Then I just said "Can we put on some wrestling?" and he instantly just shook his head yes. It made us so happy we laughed.
Then he filled us in on his new frustration word as we got him to walk over to the tub. Today when he got really frustrated, a 'goddammit' would come out. Crystal clear. We've never heard this word from Scott. Most the nurses say the kids tend to come out with curse words in these situations. It's not likely very good parenting, but it made us laugh as well. We'll take any words spoken clearly with clear meaning right now.
Stephanie is just amazing. She constantly tries to get him to respond verbally. He has called for her, with a nice clear "mom" a few times. And, with another wrestling tie, we were in the room, just letting the dvd play. And a match was starting. No one was saying anything, and Scott comes out with "Chris Jerico". Clear as a bell. We looked at the screen, and sure enough that was exactly who had just appeared. Stephanie also called just a bit ago, and said Scott was actually smiling with her talking to him.
A long, long way to go obviously, but at least some positive signs today. He did have a bout where he was trying to get something out, and just couldn't do it except for the first syllables. That will just crush your heart. His motor skills seem to be fine. He's weak, but he managed a few laps around the floor this afternoon, which certainly pleased and surprised the nurses.
I will throw a request out there. Lots of you ask if there is anything Scott may want. Obviously he's not asking for anything at the moment, but if any of you can find some wrestling dvd's, we think that would be great. He was dead immersed into his today, and we know he was watching, not just looking.
I'll never forget the first time I ever met Scott in Aboyne. I spent about 10 days there. The last night I was there, I was on Stephanie's computer emailing back home to let folks know I was headed back. This little 7-year-old walks into the room, and without hesitation, crawled right up in my lap. He just said "I wished you didn't have to go". That was concrete evidence that I knew what Stephanie and I were planning was right and real.
Now, we just have to get that little guy back to his self. Scott has always been one of the most caring kids I've seen in my life. Always worries about everyone else before himself. He'll get a gift card, and has to make sure some of it is spent on Derry. He got diagnosed with cancer 4 days before my birthday, and all he cared about was getting one of the nurses to make sure I had a birthday cake in the hospital 4 days later. I always remember Stephanie talking about how Scott would make sure Rowan, a child at his school in Aboyne who has Down's syndrome, had attention. He'd walk on the playground holding Rowan's hand, trying to make the other kids not pick on him. Scott has always been Stephanie's rock as well. Several times through this battle, he's the one that has told Stephanie "it'll be okay".
Then he gets dealt this deck of cards. Cancer. Shingles. A stroke. I sit here assured even those things have no chance in hell of keeping Scott down. They are not tough enough.
Those things just do not know they have picked on the wrong kid.
I want to thank Brandon's (Scott's schoolmate) dad Darren for stopping by today to see Scott, and for the balloon that plays music (which I'm sure Scott will find a way to respond to Steph playing continuously). Also for the talk we had in the hall. It's now easy to understand why Brandon is the caring kid he is.
He has talked some. Very sporadic though. Derry had brought in a wrestling video - (we had him at hospital today, both for Stephanie's benefit and to see if he could spark something in Scott) - that came in the mail. Prior to the bath, they had in on the TV. While we had Scott in the tub room, he was sitting and I was trying to talk with him. He started trying to put words out. They came slowly, one at a time, but repeated every time. He just said "can.....can we....can we put.....can we put on.....can we put on some......" then he couldn't find the word. I asked him a few times 'Can we put on some what?". He'd sigh, not being able to find it. Then I just said "Can we put on some wrestling?" and he instantly just shook his head yes. It made us so happy we laughed.
Then he filled us in on his new frustration word as we got him to walk over to the tub. Today when he got really frustrated, a 'goddammit' would come out. Crystal clear. We've never heard this word from Scott. Most the nurses say the kids tend to come out with curse words in these situations. It's not likely very good parenting, but it made us laugh as well. We'll take any words spoken clearly with clear meaning right now.
Stephanie is just amazing. She constantly tries to get him to respond verbally. He has called for her, with a nice clear "mom" a few times. And, with another wrestling tie, we were in the room, just letting the dvd play. And a match was starting. No one was saying anything, and Scott comes out with "Chris Jerico". Clear as a bell. We looked at the screen, and sure enough that was exactly who had just appeared. Stephanie also called just a bit ago, and said Scott was actually smiling with her talking to him.
A long, long way to go obviously, but at least some positive signs today. He did have a bout where he was trying to get something out, and just couldn't do it except for the first syllables. That will just crush your heart. His motor skills seem to be fine. He's weak, but he managed a few laps around the floor this afternoon, which certainly pleased and surprised the nurses.
I will throw a request out there. Lots of you ask if there is anything Scott may want. Obviously he's not asking for anything at the moment, but if any of you can find some wrestling dvd's, we think that would be great. He was dead immersed into his today, and we know he was watching, not just looking.
I'll never forget the first time I ever met Scott in Aboyne. I spent about 10 days there. The last night I was there, I was on Stephanie's computer emailing back home to let folks know I was headed back. This little 7-year-old walks into the room, and without hesitation, crawled right up in my lap. He just said "I wished you didn't have to go". That was concrete evidence that I knew what Stephanie and I were planning was right and real.
Now, we just have to get that little guy back to his self. Scott has always been one of the most caring kids I've seen in my life. Always worries about everyone else before himself. He'll get a gift card, and has to make sure some of it is spent on Derry. He got diagnosed with cancer 4 days before my birthday, and all he cared about was getting one of the nurses to make sure I had a birthday cake in the hospital 4 days later. I always remember Stephanie talking about how Scott would make sure Rowan, a child at his school in Aboyne who has Down's syndrome, had attention. He'd walk on the playground holding Rowan's hand, trying to make the other kids not pick on him. Scott has always been Stephanie's rock as well. Several times through this battle, he's the one that has told Stephanie "it'll be okay".
Then he gets dealt this deck of cards. Cancer. Shingles. A stroke. I sit here assured even those things have no chance in hell of keeping Scott down. They are not tough enough.
Those things just do not know they have picked on the wrong kid.
I want to thank Brandon's (Scott's schoolmate) dad Darren for stopping by today to see Scott, and for the balloon that plays music (which I'm sure Scott will find a way to respond to Steph playing continuously). Also for the talk we had in the hall. It's now easy to understand why Brandon is the caring kid he is.
Wednesday, August 29, 2007
I am so tired but my mind wont shut down so I thought I would just jot down a few words on how little Scotty is doing. He is extremely confused and has a constant look of bewilderment on his face, he has also become very frightened whenever someone comes near him. We can no longer even take his temp via his mouth as it is too distressing for him. He has a fever tonight and I tried to give him Tylenol but he went rigid and his mouth tightened, the doc said not to worry for now, if it goes any higher we will have to force it somehow. We have just given him his blood thinner shot to the stomach which means holding him down and just trying to comfort him the best we can.
He can walk a few steps and shows no signs of paralysis. He has spoken today but not really anything that made any sense, however he wasnt slurring, its like he will start to say something and then forget what he was going to say. He got very upset earlier and it was heartbreaking to watch, for a couple of minutes he was shouting for help, he kept yelling "somebody help me, I need help", I was there and so was his nurse and we were holding him and telling him he was safe but he didnt seem to know we were there.
All I can do is just snuggle up next to him and let his cheek rest in the palm of my hand. He will also rest his head on mine and I know he is getting comfort from it.
This is just pure hell.
I would like to say thank you to Susan for being such a good friend and for always being there for us, I know she was upset to see Scott this afternoon in such a sad state but I know she will stick by us no matter how bad things get. Also thank you to Tina who is a Chaplain here and who I spend many hours talking to. Today she sat beside Scott and played her harp for a long time, such beauty amid the horror of what was happening. And thanks to our angel Laura for the thoughtful phone call, it was much appreciated.
Hoping for a brighter tomorrow.
He can walk a few steps and shows no signs of paralysis. He has spoken today but not really anything that made any sense, however he wasnt slurring, its like he will start to say something and then forget what he was going to say. He got very upset earlier and it was heartbreaking to watch, for a couple of minutes he was shouting for help, he kept yelling "somebody help me, I need help", I was there and so was his nurse and we were holding him and telling him he was safe but he didnt seem to know we were there.
All I can do is just snuggle up next to him and let his cheek rest in the palm of my hand. He will also rest his head on mine and I know he is getting comfort from it.
This is just pure hell.
I would like to say thank you to Susan for being such a good friend and for always being there for us, I know she was upset to see Scott this afternoon in such a sad state but I know she will stick by us no matter how bad things get. Also thank you to Tina who is a Chaplain here and who I spend many hours talking to. Today she sat beside Scott and played her harp for a long time, such beauty amid the horror of what was happening. And thanks to our angel Laura for the thoughtful phone call, it was much appreciated.
Hoping for a brighter tomorrow.
Well we've made it through today without Stephanie and I being admitted to the psych ward at St. Joe's. Many discussions throughout the day with all 4 of the oncologists in our group, as well as Dr. Messina. Endless thoughts pour through your head when something like this is told to you. Everyone is confident Scott will recover, but it will take time.
He is very frustrated and confused right now, and likley very terrified that he can't put words in his mouth. He has had a couple of outbursts while he was being messed with for shots or using the restroom. Stephanie said he literally was yelling - with no slurred speech - for someone to "help". Luckily the nurse saw all of it and expressed that was a very good sign.
He's in there. We just have to give him everything possible to help him along and get our boy back to being our boy.
As I sit here tonight, all I can think of is how horrible such a problem is, but ironically have a sense of relief in a way knowing what we are dealing with. Especially knowing specifically what it is and the treatment is spot on. But none of that stops the heart from breaking while watching him struggle. He's just a kid. All of these kids in the ward and in treatment are just that - kids. None of them deserve any of this. But they all fight in a way I don't believe us adults could if faced with the same.
Off to attempt some rest. Derry and I both going in tomorrow morning. Stephanie needs her other boy, and maybe Scott seeing his older brother will spark him to tell him to piss off or something. You know, normal brother stuff.
He is very frustrated and confused right now, and likley very terrified that he can't put words in his mouth. He has had a couple of outbursts while he was being messed with for shots or using the restroom. Stephanie said he literally was yelling - with no slurred speech - for someone to "help". Luckily the nurse saw all of it and expressed that was a very good sign.
He's in there. We just have to give him everything possible to help him along and get our boy back to being our boy.
As I sit here tonight, all I can think of is how horrible such a problem is, but ironically have a sense of relief in a way knowing what we are dealing with. Especially knowing specifically what it is and the treatment is spot on. But none of that stops the heart from breaking while watching him struggle. He's just a kid. All of these kids in the ward and in treatment are just that - kids. None of them deserve any of this. But they all fight in a way I don't believe us adults could if faced with the same.
Off to attempt some rest. Derry and I both going in tomorrow morning. Stephanie needs her other boy, and maybe Scott seeing his older brother will spark him to tell him to piss off or something. You know, normal brother stuff.
Today's latest
I got my clarification from my middle of the night post. Technically what has happened to Scott is a form of stroke. Sinusodial Thrombosus I believe. We've still not sat down with the neurology folks, but we have talked with 3 or the 4 oncs in the group this morning. The problem exists in a "sinus" (cavity) in the middle of his brain, between the two lobes. It is creating a problem due to pressure against areas, as well as decreased blood flow to areas.
What has happened is scary. There is no other word to describe the situation. His motors skills seem mostly normal. He can stand. He can walk. He's a bit wobbly, but he's also been in a bed for most of the last 10 days.
The problem is communication or understanding. He can hear, as he'll squeeze hands or shake his head. But he can't process what folks or saying. Either that, or he simply can't coordinate the words within his mind and speak. He will protest the shots in his belly. He just told us "wait" when we went to do them. Earlier he was up and said "I have to pee really bad".
Our onc group says he is the third kid they've seen this with in about 8 months. Doc Tebbi is digging through the histories to see if there is a common drug link or time period in each kid's treatment. He also thinks a genetic factor could be involved, as Stephanie has had a blood clot in her lung before.
The news hit us hard and Stephanie had to go downstairs and have a good cry and meltdown. She's okay, and just needed to vent some of the steam and pressure from all of this. We both just needed some expectations from the doctors as well.
This is distressing to say the least. Talking to your kid and not knowing what he hears and what he understands is terrible. Not knowing if he truly realizes who you are is even worse.
The doctors say the truly expect complete recovery, but it will take time. When I pressed Doc Tebbi for some type of timeframe, he stated the previous two kids were back to what he thought "normal" in around 6 months. While that sounds bad, if it takes 6 months of work to get Scott back to "Scott", that's okay. Right now, he's just not "there," or can't convey himself to us.
Very, very distressed is the best way to describe us. Either that, or scared to death. Thinking this could be something that came along independent of the leukemia and it's treatment makes one wonder just what else can get tossed at us?
What has happened is scary. There is no other word to describe the situation. His motors skills seem mostly normal. He can stand. He can walk. He's a bit wobbly, but he's also been in a bed for most of the last 10 days.
The problem is communication or understanding. He can hear, as he'll squeeze hands or shake his head. But he can't process what folks or saying. Either that, or he simply can't coordinate the words within his mind and speak. He will protest the shots in his belly. He just told us "wait" when we went to do them. Earlier he was up and said "I have to pee really bad".
Our onc group says he is the third kid they've seen this with in about 8 months. Doc Tebbi is digging through the histories to see if there is a common drug link or time period in each kid's treatment. He also thinks a genetic factor could be involved, as Stephanie has had a blood clot in her lung before.
The news hit us hard and Stephanie had to go downstairs and have a good cry and meltdown. She's okay, and just needed to vent some of the steam and pressure from all of this. We both just needed some expectations from the doctors as well.
This is distressing to say the least. Talking to your kid and not knowing what he hears and what he understands is terrible. Not knowing if he truly realizes who you are is even worse.
The doctors say the truly expect complete recovery, but it will take time. When I pressed Doc Tebbi for some type of timeframe, he stated the previous two kids were back to what he thought "normal" in around 6 months. While that sounds bad, if it takes 6 months of work to get Scott back to "Scott", that's okay. Right now, he's just not "there," or can't convey himself to us.
Very, very distressed is the best way to describe us. Either that, or scared to death. Thinking this could be something that came along independent of the leukemia and it's treatment makes one wonder just what else can get tossed at us?
An ANSWER
Late post/update here. Just off phone with Stephanie. Scott went for a combination MRI/MRV after the CT. Turns out Steph's persistence (I just helped on the phone during a discussion) with Doctor Obzut about going ahead with the MRI after a clear CT paid off. Doctor O has actually thanked Stephanie for pushing her to go ahead, as the imaging discovered the source of Scott's odd behavior (and maybe even this whole hospital stay - that's arguable). Doc O admitted it wasn't really the direction she would have went.
Scott has a "partially occluded" blood vessel in his head. Basically a blood clot, but it's not completely blocked the specific vein. The treatment will begin with blood thinners (similar to warfarin) injected, yes, into his belly. They are the subcutaneous type, not the deep tissue type. Which basically means the nurses say the needles aren't that big.
While knowing your child has a partial clot in his head is certainly nothing to celebrate, at least we now know what in the world to actually deal with and treat, and the treatment is beginning as we speak. We THINK it will be a pair of injections twice a day. We'll never fault Doc O for that not being her intended direction. This cancer mess has so many twists and turns, it hard to imagine.
I do want to clarify something - this doesn't mean Scott has had a stroke. It means something has been found that needs to be corrected as if it completely blocked, that is the definition of a stroke (I will verify the accuracy of that with neurology in the morning).
Anyway, everything treatment-wise will be detailed out with morning rounds with doctors.
I love my "hovering mother" (as Doc Messina called her) of a wife. An object lesson in being your child's advocate and voice.
I think they're may be a graveyard shift radiologist that needs a huge thank you as well.
Scott has a "partially occluded" blood vessel in his head. Basically a blood clot, but it's not completely blocked the specific vein. The treatment will begin with blood thinners (similar to warfarin) injected, yes, into his belly. They are the subcutaneous type, not the deep tissue type. Which basically means the nurses say the needles aren't that big.
While knowing your child has a partial clot in his head is certainly nothing to celebrate, at least we now know what in the world to actually deal with and treat, and the treatment is beginning as we speak. We THINK it will be a pair of injections twice a day. We'll never fault Doc O for that not being her intended direction. This cancer mess has so many twists and turns, it hard to imagine.
I do want to clarify something - this doesn't mean Scott has had a stroke. It means something has been found that needs to be corrected as if it completely blocked, that is the definition of a stroke (I will verify the accuracy of that with neurology in the morning).
Anyway, everything treatment-wise will be detailed out with morning rounds with doctors.
I love my "hovering mother" (as Doc Messina called her) of a wife. An object lesson in being your child's advocate and voice.
I think they're may be a graveyard shift radiologist that needs a huge thank you as well.
Tuesday, August 28, 2007
This is like a tide
Or more accurately, a storm surge. Great news this afternoon from the BMA. Everyone happy, relieved, etc. Derry and I head home to take care of things here.
Then a call. Scott is acting very strangely. No reason to get into details, but he seemed disoriented and "lost" according to Stephanie. This resulted in very much concern with docs and nurses. A CT of his head was ordered to check for bleeding. That was done and we can already report it showed no bleeding. Showed no aneurysm (sp?) or stroke. That's great news too.
But Scott hasn't changed. He's still vacant and lost. Sat down on bed and was confused like he didn't know how to lie down. Very strange things (that's not the only thing he's done). He doesn't seem to know who Stephanie is either.
Next he's off to an MRI, which will be done tonight at some time as well.
We will be pushing the docs for a spinal tap to be done tomorrow. Would have been easily done today, but hindsight is 20/20. Logic dictates he shouldn't have relapse in his spinal fluid because a) he's never tested positive in his fluid and b) if his marrow is still fine he should not be positive in the fluid because the bad stuff is manufactured from bad marrow cells.
But the tap can test for that, as well as viral and bacterial meningitis.
Needless to say, the euphoria from today's first "big" worry wasn't long lived. Great news for the second time with the negative CT.
But we still don't know the root cause of his fevers OR this very abnormal behavior. Back to borderline window-licker status for us. No rest for the weary in this fight. Like Stephanie said - we just want our smiling little boy back doing all of his accents perfectly. I want to hear him mimic my voice message on my phone. He calls it some time just to make fun of me. I just want a message from him because he's just being a goofy little boy.
Then a call. Scott is acting very strangely. No reason to get into details, but he seemed disoriented and "lost" according to Stephanie. This resulted in very much concern with docs and nurses. A CT of his head was ordered to check for bleeding. That was done and we can already report it showed no bleeding. Showed no aneurysm (sp?) or stroke. That's great news too.
But Scott hasn't changed. He's still vacant and lost. Sat down on bed and was confused like he didn't know how to lie down. Very strange things (that's not the only thing he's done). He doesn't seem to know who Stephanie is either.
Next he's off to an MRI, which will be done tonight at some time as well.
We will be pushing the docs for a spinal tap to be done tomorrow. Would have been easily done today, but hindsight is 20/20. Logic dictates he shouldn't have relapse in his spinal fluid because a) he's never tested positive in his fluid and b) if his marrow is still fine he should not be positive in the fluid because the bad stuff is manufactured from bad marrow cells.
But the tap can test for that, as well as viral and bacterial meningitis.
Needless to say, the euphoria from today's first "big" worry wasn't long lived. Great news for the second time with the negative CT.
But we still don't know the root cause of his fevers OR this very abnormal behavior. Back to borderline window-licker status for us. No rest for the weary in this fight. Like Stephanie said - we just want our smiling little boy back doing all of his accents perfectly. I want to hear him mimic my voice message on my phone. He calls it some time just to make fun of me. I just want a message from him because he's just being a goofy little boy.
In the words of Doc Tebbi...
"there are no bad cells. Not even a hint of any. But I'd bought a one-way ticket to Alaska just in case there was".
So, Doc Tebbi's preliminary results is there is zero evidence of relapse in his marrow. Of course that is preliminary from Doc Tebbi looking at the pathology slides, but to quote him again - "I've looked at slides for many years, and I've not gone bananas just yet".
So yes, we have to wait for the lab results "officially". But nobody here has reason to doubt Doc Tebbi viewing sample slides from two different spots.
Most likely all antibiotics will be stopped tonight, then bloodwork check at the usual time tomorrow. Doc Tebbi says the results of that may have him released tomorrow of the next day.
More later. Needless to say there is a big "YIPPEE" from here!
Still feels like crap. Still ain't talkin', but this is about the biggest relief and best news possible today.
So, Doc Tebbi's preliminary results is there is zero evidence of relapse in his marrow. Of course that is preliminary from Doc Tebbi looking at the pathology slides, but to quote him again - "I've looked at slides for many years, and I've not gone bananas just yet".
So yes, we have to wait for the lab results "officially". But nobody here has reason to doubt Doc Tebbi viewing sample slides from two different spots.
Most likely all antibiotics will be stopped tonight, then bloodwork check at the usual time tomorrow. Doc Tebbi says the results of that may have him released tomorrow of the next day.
More later. Needless to say there is a big "YIPPEE" from here!
Still feels like crap. Still ain't talkin', but this is about the biggest relief and best news possible today.
Just a quick update. BMA is done and Scott back at room. It will be a couple of hours still for Doc Tebbi's preliminary results. "Official" results from lab will be tomorrow. Two samples were taken to help eliminate sampling error.
Everyone still a wreck and we're just waiting.
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Sent from my BlackBerry Wireless Device
Monday, August 27, 2007
Today is turning out to be horrible. No change in Scott, just constant exhaustion to the point where he wont even talk, not even a "yes" or "no". He has been running low grade fever again all day, it started to spike an hour ago but then eased a little.
Without getting into all the details I have come to realise that everyone I talk to gives me different answers to my questions regarding medication, fever, relapse etc. I am not becoming crazy or paranoid, I am just very aware.
The doctors and nurses are pretty much stumped as to what is going on with Scott and I cannot just sit here and watch him slip further and further into his abyss. I am not a doctor but I know that some of the symptoms Scott is displaying tie in with relapse, even some of his bloodwork is showing signs that this may be the case. So I have asked that Dr Tebbi do a bone marrow aspiration tomorrow and he agreed, I know that he would not have agreed unless he too thought it were possible. He still says that this is not likely and it goes without saying that he is the specialist and we hope he is right, having said that I want as many avenues explored as possible.
As each day passes it becomes less likely that this is viral, but something is going on and time is as always, of the essence.
It is heartbreaking to watch and not be able to do anything to make it all better. It is frustrating and distressing to see the doctors start to become uneasy.
I just want to see Scott laugh and smile, I want my baby back.
Without getting into all the details I have come to realise that everyone I talk to gives me different answers to my questions regarding medication, fever, relapse etc. I am not becoming crazy or paranoid, I am just very aware.
The doctors and nurses are pretty much stumped as to what is going on with Scott and I cannot just sit here and watch him slip further and further into his abyss. I am not a doctor but I know that some of the symptoms Scott is displaying tie in with relapse, even some of his bloodwork is showing signs that this may be the case. So I have asked that Dr Tebbi do a bone marrow aspiration tomorrow and he agreed, I know that he would not have agreed unless he too thought it were possible. He still says that this is not likely and it goes without saying that he is the specialist and we hope he is right, having said that I want as many avenues explored as possible.
As each day passes it becomes less likely that this is viral, but something is going on and time is as always, of the essence.
It is heartbreaking to watch and not be able to do anything to make it all better. It is frustrating and distressing to see the doctors start to become uneasy.
I just want to see Scott laugh and smile, I want my baby back.
Potassium?
Potassium levels seem to be the problem this morning. Low potassium levels are no good. Seems the antifungal - Abelset or something like that - is really agressive at lowering potassium levels. Scott had 3 loads of potassium and wasn't de-accessed until about 8 this morning. He's "free" from the IV pole at the moment. They'll leave him disconnected until about 1 or 2 today, as that is when his next antibiotic is due to start. The morning blood work hadn't come back when I left and came to work. Doc Tebbi is awaiting it to see what may be ordered today. We sit and dread they come in with an order for a BMA (bone marrow aspiration). Won't talk too much about that, but an unscheduled BMA is never wanted.
Scott didn't hardly sleep at all last night, neither did Stephanie. Nurse Danni was in all night messing with one of the infusion pump, temps, blood pressure, etc. He seemed irritated this morning during the de-access. Removing the Tigaderm is horrid. I think we'll get some of those things and mail them to everyone to slap on their chest for a week and then take it off. Basically, it sucks. She also told him since she was freeing him, she better have word of him being out of bed when she returned this evening at 7.
Scott didn't hardly sleep at all last night, neither did Stephanie. Nurse Danni was in all night messing with one of the infusion pump, temps, blood pressure, etc. He seemed irritated this morning during the de-access. Removing the Tigaderm is horrid. I think we'll get some of those things and mail them to everyone to slap on their chest for a week and then take it off. Basically, it sucks. She also told him since she was freeing him, she better have word of him being out of bed when she returned this evening at 7.
Sunday, August 26, 2007
CT clear
Just wanted to post that the CT results came back and were clear. The only thing that showed up was a slightly enlarged spleen, which was present at diagnosis in January. That's all for tonight.
Sunday evening update
Derry and I just back home from a long day at the hospital. The tube experience was, well, awful. All the contrast did get put down the tube for the scan. Probably about 1/3 of it came back up in two vomiting rounds. And the tube comes partially out then as well. But it got back down both times, and was actually taken out just before he was taken down for the CT.
Scott did very well all things considered. I told Stephanie and the nurses at least we saw some anger in him. We'll take any emotion compared to the complete listless nature of the past week.
So he was back at room and starting the antifungal treatment for this evening. He's had potassium, the feeding tube through the nose, about a 20 ounces of contrast for his CT, a round of vanco and benadryl.
All he has left tonight is GCSF shots (something he's never had, which spike the white blood count), a unit of blood, a change of the access needle in his port (since it's been in a week tonight) and then nutrition via IV.
This is painful to watch. We can only have nightmares about how it must be for Scott.
Scott did very well all things considered. I told Stephanie and the nurses at least we saw some anger in him. We'll take any emotion compared to the complete listless nature of the past week.
So he was back at room and starting the antifungal treatment for this evening. He's had potassium, the feeding tube through the nose, about a 20 ounces of contrast for his CT, a round of vanco and benadryl.
All he has left tonight is GCSF shots (something he's never had, which spike the white blood count), a unit of blood, a change of the access needle in his port (since it's been in a week tonight) and then nutrition via IV.
This is painful to watch. We can only have nightmares about how it must be for Scott.
Tubed
Scott was having none of drinking the contrast. That just was not going to happen, even with him knowing he would be tubed.
So the tube came. And went down very easily. Which was shocking to us, the nurses and Scott I think. But he is still very, very stressed.
Now we just hope it stays down for a couple of hours. He has to have at least two loads of contrast prior to the CT. First one going down now.
And, yes, we are very scared. Want the test done, yet at the same time scared of it.
So the tube came. And went down very easily. Which was shocking to us, the nurses and Scott I think. But he is still very, very stressed.
Now we just hope it stays down for a couple of hours. He has to have at least two loads of contrast prior to the CT. First one going down now.
And, yes, we are very scared. Want the test done, yet at the same time scared of it.
Update 2
The doctor has been and we had a chat.
Today Scott is going to have a ct scan of his tummy to see what is going on down there, he has to drink 3 glasses of contrast first or have a tube put down him and have it that way. This is not going to be easy as he is puking up anything in his stomach right now, if they use the tube he will probably gag and throw up the tube.
He is also getting blood, potassium and GCSF shots to boost his counts, or to try to anyway.
They are going to start feeding him tonight through his port, not through a tube, so that is ok, although he may be very sick after a week of no food.
He said "Scott was probably not relapsing". Probably. That is not a word that i wanted to hear.
He was honest and said he did not know what was going on.
We are very scared.
Today Scott is going to have a ct scan of his tummy to see what is going on down there, he has to drink 3 glasses of contrast first or have a tube put down him and have it that way. This is not going to be easy as he is puking up anything in his stomach right now, if they use the tube he will probably gag and throw up the tube.
He is also getting blood, potassium and GCSF shots to boost his counts, or to try to anyway.
They are going to start feeding him tonight through his port, not through a tube, so that is ok, although he may be very sick after a week of no food.
He said "Scott was probably not relapsing". Probably. That is not a word that i wanted to hear.
He was honest and said he did not know what was going on.
We are very scared.
Update.
All Scotts counts dropped last night, the wbc quite substantially and that is the one they need to rise. He is 100.3 which is not a good omen for the rest of the day as early morning is usually the lowest temp I was told. Still sleeping, barely responsive.
I got a bit mad earlier and said if I dont start to see more being done to help Scott today then I was going to take him elsewhere.
The doctor is at Mass and wont be in 'till noon.
They will probably start tube feeding today as it has been 7 days now with no food.
I got a bit mad earlier and said if I dont start to see more being done to help Scott today then I was going to take him elsewhere.
The doctor is at Mass and wont be in 'till noon.
They will probably start tube feeding today as it has been 7 days now with no food.
Saturday, August 25, 2007
Continuing on with little change
The more things don't change.....well....things haven't changed. Scott seems in a cycle now. Pre-meds, then the antifungal medicine. The first two doses caused reactions, the one last night being milder.
Temp is like riding a roller-coaster. Up. Down. Repeat. He had a period of 15 hours at one point with no temperature. Then came the anti-fungal - which rises the temperature. We await fungal test results, which come slowly.
GRRRRR!
The docs seem him and state "he looks great and is doing fine". Which is grossly arguable. He looks tired. He's sleeping about 20 hours per day. He's eating nothing. Well, that's not exactly true - he had 3 doritos yesterday. 3.
We worry about him developing pneumonia from being in bed so much. Stephanie got him in the bath tub earlier today and to make a few laps around the floor. He's flushed and weepy most of the time. Obviously his stomach hurts and has probably shruken to nothing now.
So, no answers. It seems there is no way it is bacterial at this point, but I'm not a doctor. Not having a definitive answer for the fevers - fevers that won't abate - is worrisome, scary, aggravating and maddening.
Temp is like riding a roller-coaster. Up. Down. Repeat. He had a period of 15 hours at one point with no temperature. Then came the anti-fungal - which rises the temperature. We await fungal test results, which come slowly.
GRRRRR!
The docs seem him and state "he looks great and is doing fine". Which is grossly arguable. He looks tired. He's sleeping about 20 hours per day. He's eating nothing. Well, that's not exactly true - he had 3 doritos yesterday. 3.
We worry about him developing pneumonia from being in bed so much. Stephanie got him in the bath tub earlier today and to make a few laps around the floor. He's flushed and weepy most of the time. Obviously his stomach hurts and has probably shruken to nothing now.
So, no answers. It seems there is no way it is bacterial at this point, but I'm not a doctor. Not having a definitive answer for the fevers - fevers that won't abate - is worrisome, scary, aggravating and maddening.
I want a whisky drink, then a vodka drink, then a cider drink ...
Scott is still in hospital and I have no real news to report which is frustrating and making me very mad.
He nearly went for a whole day without getting a fever, he did have a spike of 102.6 last night this was probably a side effect from the fungus medicine though. This morning too was going well until his cheeks started going red about 10am, his temp isnt high, it is 100.5 and has remained that way for 4 hours, no spike, but no cooling down either. 100.5 is classified as a fever in pediatric oncology.
He is having a very nasty 'tummy' side effect from all the drugs and is currently being tested for all manner of GI problems.
I am still chasing them up regarding the mono but not getting any answers. I am getting very irritated but trying my best not to start yelling at anyone. This morning the doctor came when I was in the shower, you'd think he would come back and talk to me wouldnt you? Oh no, he went bloody home!!!!!! I wasnt having any of that and whilst he didnt actually return to the hospital he did call me. I got the "oh he looks great, bloodwork is fine, you'll be out of here in a few days" line. The fact that he sleeps for 22 hours a day, he hasnt eaten anything apart from 3 gummi frogs and 3 doritos since Saturday, he hasnt had a drink, he doesnt even have the energy to talk, doesnt seem to be of any concern to them and also, grrrrrrr, they think Im crazy because I ask too many questions and get my knickers in such a twist.
No bacterial growths either, yet still he is being given a very potent anti bacterial drug. I dont believe that this is a good thing at all, many children become immune to it and then the problem is if they really need it further down the road it wont work.
Damn Im fizzing.
Last night I got talking to this lovely lady, her son has down syndrome and also had leukemia, they went for their end of treatment visit 2 weeks ago, a day that should have been a celebration, a day when maybe they could start to put this nightmare behind them, well it wasnt to be, instead they were told he had relapsed. He also has developed septis and has gone for surgery today to have his old port removed and a new one fitted, the old one became infected.
So maybe I should just shut up and be thankful that we aint walking in her shoes today.
But it isnt easy seeing your baby too weak to talk, to stand, to eat, and to not know why.
Im off to make some more delicious and wholesome coffee, with no added growth hormones. Oh and speaking of coffee, thank you Susan, I love you. :)
He nearly went for a whole day without getting a fever, he did have a spike of 102.6 last night this was probably a side effect from the fungus medicine though. This morning too was going well until his cheeks started going red about 10am, his temp isnt high, it is 100.5 and has remained that way for 4 hours, no spike, but no cooling down either. 100.5 is classified as a fever in pediatric oncology.
He is having a very nasty 'tummy' side effect from all the drugs and is currently being tested for all manner of GI problems.
I am still chasing them up regarding the mono but not getting any answers. I am getting very irritated but trying my best not to start yelling at anyone. This morning the doctor came when I was in the shower, you'd think he would come back and talk to me wouldnt you? Oh no, he went bloody home!!!!!! I wasnt having any of that and whilst he didnt actually return to the hospital he did call me. I got the "oh he looks great, bloodwork is fine, you'll be out of here in a few days" line. The fact that he sleeps for 22 hours a day, he hasnt eaten anything apart from 3 gummi frogs and 3 doritos since Saturday, he hasnt had a drink, he doesnt even have the energy to talk, doesnt seem to be of any concern to them and also, grrrrrrr, they think Im crazy because I ask too many questions and get my knickers in such a twist.
No bacterial growths either, yet still he is being given a very potent anti bacterial drug. I dont believe that this is a good thing at all, many children become immune to it and then the problem is if they really need it further down the road it wont work.
Damn Im fizzing.
Last night I got talking to this lovely lady, her son has down syndrome and also had leukemia, they went for their end of treatment visit 2 weeks ago, a day that should have been a celebration, a day when maybe they could start to put this nightmare behind them, well it wasnt to be, instead they were told he had relapsed. He also has developed septis and has gone for surgery today to have his old port removed and a new one fitted, the old one became infected.
So maybe I should just shut up and be thankful that we aint walking in her shoes today.
But it isnt easy seeing your baby too weak to talk, to stand, to eat, and to not know why.
Im off to make some more delicious and wholesome coffee, with no added growth hormones. Oh and speaking of coffee, thank you Susan, I love you. :)
Thursday, August 23, 2007
fungus continued...
Scott did have a reaction to the drug. He started shaking, like bad shivers, then he started to cry and said he was "anxious" and "nervous", two words I dont think he has ever used before. He was twitching all over and getting really distressed. The nurse stopped the infusion and gave the antidote and within a couple of minutes he was asleep and grinding his teeth. She then restarted the drug but ran it much slower. It took three hours altogether.
She said that Scott did very good, his blood pressure stayed stable and so did his temperature. She also said the reaction could have been far, far worse and that all went well. They are now running two anti bacterial drugs, trying to cover all their bases I guess.
I have no idea if any of these drugs will help, nor do the doctors, if Scotts fevers and exhaustion are due to something viral then none of this will benefit him.
Im going to bed now, hopefully tomorrow will bring a better day.
She said that Scott did very good, his blood pressure stayed stable and so did his temperature. She also said the reaction could have been far, far worse and that all went well. They are now running two anti bacterial drugs, trying to cover all their bases I guess.
I have no idea if any of these drugs will help, nor do the doctors, if Scotts fevers and exhaustion are due to something viral then none of this will benefit him.
Im going to bed now, hopefully tomorrow will bring a better day.
click me
Sandie sent me Runrig. If Im crying they make me smile and if Im happy I'll start to howl.
So I played Year of the Flood and I smiled.
So I played Year of the Flood and I smiled.
fungus
This is getting very scary.
They are starting to run the anti fungal medicine which looks like a bag of yellow chemo. It will go in over 2 hours, he has been sedated and also given tylenol. I got a bit of a talk about the very possible risk of an allergic reaction which, if its going to come, will come about the 1 hour mark. He has 1 dedicated nurse over the 2 hrs and 1 back up in case he takes a fit. The drugs to tackle the reaction are sitting here ready but I was told it can be a bit freaky for me and Scott as he would be aware, even through the sedation, of what was going on.
Every branch of his IV pole has something hanging from it. This is far worse than high dose chemo.
Like I said, he is sedated at the moment and isnt aware of me bawling my eyes out and typing this. His favourite nurse has stayed late tonight specifically to be his dedicated nurse through this and his other special nurse is the back up.
If it does turn out to be fungal then this may be routine for 14 days and thats only IF its a nice fungus.
Half an hour has passed, just got to watch and wait now.
PS. Benji came to visit Scott before the start of the infusion.
They are starting to run the anti fungal medicine which looks like a bag of yellow chemo. It will go in over 2 hours, he has been sedated and also given tylenol. I got a bit of a talk about the very possible risk of an allergic reaction which, if its going to come, will come about the 1 hour mark. He has 1 dedicated nurse over the 2 hrs and 1 back up in case he takes a fit. The drugs to tackle the reaction are sitting here ready but I was told it can be a bit freaky for me and Scott as he would be aware, even through the sedation, of what was going on.
Every branch of his IV pole has something hanging from it. This is far worse than high dose chemo.
Like I said, he is sedated at the moment and isnt aware of me bawling my eyes out and typing this. His favourite nurse has stayed late tonight specifically to be his dedicated nurse through this and his other special nurse is the back up.
If it does turn out to be fungal then this may be routine for 14 days and thats only IF its a nice fungus.
Half an hour has passed, just got to watch and wait now.
PS. Benji came to visit Scott before the start of the infusion.
Benji is a Star
Some of you may remember when the picture above was taken. It was back shortly after Scott's diagnosis. It is Scott with Benji, one of the treatment dogs at the hospital. Scott had the distinction of being Benji's first patient ever. I can tell you it certainly perked Scott up that day, and has each time he's visited to date (along with the other treatment dogs that work at St. Joe's). Hopefully Benji doesn't get an ego, because he's made an PetsIncredible.com video! You can view the video at this link:
I'm glad, and I know Scott is glad there are people like the Gould's that do these things on their own, in their free time. Before watching the video I knew Benji was rescued, but not the details. It seems odd, as our cat Booger was dumped out of a car in the exact same manner at a gas station one day while I was filling up. I also did not know Benji's mom Jill lost her first husband to cancer.
A huge thanks to Cary and Jill. We have a son that gets his hospital days brightened with their efforts. They, and their dog do make a difference.
Tubthumping.
We had a good night last night, no throwing up and NO FEVER! However by mid morning he started burning up again, not terribly high but high enough to raise concern and high enough that Dr Tebbi may well have him on anti-fungal medication before the day is out. I cannot tell you exactly what his temp is right now as Scott has learned how to cheat the thermometer and it seems we can now only get a truly accurate reading from a nurse that dont take no monkey business!!
Fungus can be extremely difficult to treat and usually involves intensive care. An incredibly frightening thing is fungus.
Dr Tebbi has told me that he doesnt believe Scott has fungus as he is not ill enough, but with no bacterial cultures growing and no outward signs of anything viral, then this will be the next step.
Still no mono results back yet either.
His bloodwork this morning wasnt too bad, anc is 657, quite a jump in the right direction since yesterday but still a low wbc and this needs to come up.
Scott is still not eating or drinking, he has had a few of Angel Daves gummy frogs, but thats been it since Sunday lunchtime. I tried to get him to have some water earlier on and he went all 'Exorcist' on me again. He just sleeps. He hasnt even had the strength to get to the bathroom and brush his teeth or wash up. They are going to give him a bed bath later, well perhaps not, but they will try anyway.
He is constantly cold, the room is at 60, and he is only allowed a sheet and very thin blanket. I keep telling the doctors and nurses about how in the olden days, when I was just a nipper, we had to 'sweat' the fever out, lots of blankets, cups of tea and a cat asleep on your head, they look at me like Im crazy.
If Scott goes above 103 they bring out the thumbscrews and rack. Well a cooling blanket and icy cold sponges anyway.
Thats all folks, Im not going to get all emotional and weepy on y'all you'll be pleased to know, behind this pathetic exterior there is a very tough old goat. :)
Thanks for checking in.
Fungus can be extremely difficult to treat and usually involves intensive care. An incredibly frightening thing is fungus.
Dr Tebbi has told me that he doesnt believe Scott has fungus as he is not ill enough, but with no bacterial cultures growing and no outward signs of anything viral, then this will be the next step.
Still no mono results back yet either.
His bloodwork this morning wasnt too bad, anc is 657, quite a jump in the right direction since yesterday but still a low wbc and this needs to come up.
Scott is still not eating or drinking, he has had a few of Angel Daves gummy frogs, but thats been it since Sunday lunchtime. I tried to get him to have some water earlier on and he went all 'Exorcist' on me again. He just sleeps. He hasnt even had the strength to get to the bathroom and brush his teeth or wash up. They are going to give him a bed bath later, well perhaps not, but they will try anyway.
He is constantly cold, the room is at 60, and he is only allowed a sheet and very thin blanket. I keep telling the doctors and nurses about how in the olden days, when I was just a nipper, we had to 'sweat' the fever out, lots of blankets, cups of tea and a cat asleep on your head, they look at me like Im crazy.
If Scott goes above 103 they bring out the thumbscrews and rack. Well a cooling blanket and icy cold sponges anyway.
Thats all folks, Im not going to get all emotional and weepy on y'all you'll be pleased to know, behind this pathetic exterior there is a very tough old goat. :)
Thanks for checking in.
Wednesday, August 22, 2007
Repeat
Repeat the situation from yesterday. Temp goes up. Get Tylenol. Temp drops a bit. Tylenol wears off. Temp rises again.
That's the story on the temp.
Then thanks to tylenol - and the fact Scott is eating literally nothing - he got sick about 4 a.m. when he took his tylenol. Great fun for he and Steph in the middle of the night.
Then today the antibiotic was switched. Scott was put on IV Vancomycin. A rather heavy-duty antibiotic used to fight tough bugs such as MRSA (the SuperBug). Shortly afterwards Scott got his second bracelet from the Red Bracelet Club. They give out a red bracelet for each drug you have an allergic reaction to. Yes, he's allergic to the vancomycin. But he is still on the drug, and will just be pre-medicated with Benadryl.
So it is still a watch and wait game. A sleepless one for Stephanie, who hasn't "slept" since admission Sunday night. Mostly dozing sleep for Scott. Who appears asleep roughly 20 hours of each day. Roller coaster fever, and still no definitive answer on a cause. Others in the cancer world have told us their kids did the same thing, never with a clear reason why. While good to know, it isn't very comforting.
I did get Derry by the hospital for a bit today at the end of the school day. He got bored quickly, as Scott just isn't awake much. So bored his homework even got done in the ward's playroom. But he did get to visit with his mum, and her with him - even if she did do everything possible to embarass him with hugs and kisses.
So, here we sit and wait. Scott and Steph at St. Joe's. Dez and I here watching police video shows and eating heaps of chicken and hot dogs. All of us hoping for that wonderful return to "normal" - which right now is simply defined as "Scott is outpatient".
That's the story on the temp.
Then thanks to tylenol - and the fact Scott is eating literally nothing - he got sick about 4 a.m. when he took his tylenol. Great fun for he and Steph in the middle of the night.
Then today the antibiotic was switched. Scott was put on IV Vancomycin. A rather heavy-duty antibiotic used to fight tough bugs such as MRSA (the SuperBug). Shortly afterwards Scott got his second bracelet from the Red Bracelet Club. They give out a red bracelet for each drug you have an allergic reaction to. Yes, he's allergic to the vancomycin. But he is still on the drug, and will just be pre-medicated with Benadryl.
So it is still a watch and wait game. A sleepless one for Stephanie, who hasn't "slept" since admission Sunday night. Mostly dozing sleep for Scott. Who appears asleep roughly 20 hours of each day. Roller coaster fever, and still no definitive answer on a cause. Others in the cancer world have told us their kids did the same thing, never with a clear reason why. While good to know, it isn't very comforting.
I did get Derry by the hospital for a bit today at the end of the school day. He got bored quickly, as Scott just isn't awake much. So bored his homework even got done in the ward's playroom. But he did get to visit with his mum, and her with him - even if she did do everything possible to embarass him with hugs and kisses.
So, here we sit and wait. Scott and Steph at St. Joe's. Dez and I here watching police video shows and eating heaps of chicken and hot dogs. All of us hoping for that wonderful return to "normal" - which right now is simply defined as "Scott is outpatient".
Tuesday, August 21, 2007
Another day...
...and another day with basically no answers. Scott had a chest xray, and nothing showed. Nothing growing in cultures yet. Nothing showing abonormal in blood. Scott with few symptoms other than a sore tummy, the fever and basically exhaustion. He's sleeping about 20 hours per day. Not eating much of anything. Not drinking much of anything.
Yet the fever persists. Tylenol drops it down for a bit, then it is right back up.
Tomorrow they are likely to switch the antibiotic from a broad-spectrum one to an antifungal antibiotic.
We're both wrecks. Scott is a mess. The "non-answers" just let endless thoughts run rampant in your head. Too many things.
It is Scott's "first" fever admission since diagnosis. Going almost 7 months without one shocks everyone we cross paths with at the clinic and hospital. But we've been diligent with what the docs told us. Prevention to the hilt. Yet there he stays in the hospital with a fever.
And no answers to this point. It is maddening enough to turn a normal person into a window-licker.
On the lighter side - we have to send a big Thank You to Susan, Steve and Taylor. They keep an eye on here and remembered Scott and Derry's birthday's. Susan came by the hospital today to see Scott and all of us. Taylor (her daughter) was due for a clinic visit today. Some of you may remember us posting about the night Scott was diagnosed along with two other kids, both teen girls. Taylor is one of those two. It was nice to hear from Susan that Taylor's treatment is complete (she was dx'd with Lymphoma) and she's started back to school this week with what Susan says is the consensus coolest hair in the school. It is great to get some good news about one of the kids at the hospital. That certainly doesn't seem to be the norm dealing with this beast.
Another shout out to our chemo angel Dave and his family. Scott had mail from him which brightened his day. I do have one question for Dave though -
Did you get the fish in the picture mounted?
That was about the only time Scott perked up today, except when Gracie (one of the treatment dogs) made a stop by his room this afternoon. Thanks a bunch folks. Please know it never fails to brighten his day.
Yet the fever persists. Tylenol drops it down for a bit, then it is right back up.
Tomorrow they are likely to switch the antibiotic from a broad-spectrum one to an antifungal antibiotic.
We're both wrecks. Scott is a mess. The "non-answers" just let endless thoughts run rampant in your head. Too many things.
It is Scott's "first" fever admission since diagnosis. Going almost 7 months without one shocks everyone we cross paths with at the clinic and hospital. But we've been diligent with what the docs told us. Prevention to the hilt. Yet there he stays in the hospital with a fever.
And no answers to this point. It is maddening enough to turn a normal person into a window-licker.
On the lighter side - we have to send a big Thank You to Susan, Steve and Taylor. They keep an eye on here and remembered Scott and Derry's birthday's. Susan came by the hospital today to see Scott and all of us. Taylor (her daughter) was due for a clinic visit today. Some of you may remember us posting about the night Scott was diagnosed along with two other kids, both teen girls. Taylor is one of those two. It was nice to hear from Susan that Taylor's treatment is complete (she was dx'd with Lymphoma) and she's started back to school this week with what Susan says is the consensus coolest hair in the school. It is great to get some good news about one of the kids at the hospital. That certainly doesn't seem to be the norm dealing with this beast.
Another shout out to our chemo angel Dave and his family. Scott had mail from him which brightened his day. I do have one question for Dave though -
Did you get the fish in the picture mounted?
That was about the only time Scott perked up today, except when Gracie (one of the treatment dogs) made a stop by his room this afternoon. Thanks a bunch folks. Please know it never fails to brighten his day.
Monday, August 20, 2007
Monday evening
Scott's temperature just keeps bouncing all over. Last word from Stephanie was it was back up to 101.9. There is nothing good about that. It will make you climb the walls or either beat your head against it. Just no sure fire way to tell what in the world is causing it to jump around.
It is some type of infection, but what? Scott has no energy. None. Can barely sit up for more than a couple minutes. It is very troublesome and nerve-wracking.
Docs think he may have mono. Which just puts horrible thoughts through our head. Mono was one of the "it could be's" the night Scott got sick in January.
Just have to wait and watch. Which is damned painful. So far there is nothing positive in the cultures, but they are only 24 hours old now.
It's like being pulled around by some freak, sick puppetteer or something.
It is some type of infection, but what? Scott has no energy. None. Can barely sit up for more than a couple minutes. It is very troublesome and nerve-wracking.
Docs think he may have mono. Which just puts horrible thoughts through our head. Mono was one of the "it could be's" the night Scott got sick in January.
Just have to wait and watch. Which is damned painful. So far there is nothing positive in the cultures, but they are only 24 hours old now.
It's like being pulled around by some freak, sick puppetteer or something.
Reporting live on scene from room 237
New bloodwork has just come back and his counts have dropped quite substantially since Thursday and he needs a tranfusion pronto. This wont help with the fevers but it certainly should make him feel less washed out.
I worry 24/7 about the 'r' word and when I mentioned this to Dr. Tebbi earlier (before the counts came back) I saw in his eyes that he could see that possibility too. Or maybe that was just my paranoia. However I just had a bit of a chat with him and he said "capital N, capital O, capital T, Scotty is NOT relapsing, there are NO flimsy bad cells". He then showed me the new bloodwork and started talking about numbers I had never even noticed before, he said there were two indicators that Scott was not relapsing and that his bone marrow was working. I patted his knee and told him how lovely he was. He just laughed his cute little Iranian laugh. Is it normal to fall head over heels for your little boys oncologist?
He is to be tested for mono (glandular fever to y'all back home) as Dr Tebbi said it is rampant in Florida and this could explain Scotts lethargy.
His temperature went up to 101.7 during the night but he has been given tylenol and it is now 99.2. I hope it stays down but judging by the last few days it will bounce right back up again. The general purpose antibiotics are being continued until whatever is causing Scotts punyness is traced so they can give something more specific.
Well thats about it. I am still very worried but thankfully Dr Tebbi has stomped out my main fear.
Im off to make some coffee and since this place is like the Marie Celeste I'll get it all to myself!
Thanks for checking up on us and sorry I was such a wuss last night, but this really does suck.
I worry 24/7 about the 'r' word and when I mentioned this to Dr. Tebbi earlier (before the counts came back) I saw in his eyes that he could see that possibility too. Or maybe that was just my paranoia. However I just had a bit of a chat with him and he said "capital N, capital O, capital T, Scotty is NOT relapsing, there are NO flimsy bad cells". He then showed me the new bloodwork and started talking about numbers I had never even noticed before, he said there were two indicators that Scott was not relapsing and that his bone marrow was working. I patted his knee and told him how lovely he was. He just laughed his cute little Iranian laugh. Is it normal to fall head over heels for your little boys oncologist?
He is to be tested for mono (glandular fever to y'all back home) as Dr Tebbi said it is rampant in Florida and this could explain Scotts lethargy.
His temperature went up to 101.7 during the night but he has been given tylenol and it is now 99.2. I hope it stays down but judging by the last few days it will bounce right back up again. The general purpose antibiotics are being continued until whatever is causing Scotts punyness is traced so they can give something more specific.
Well thats about it. I am still very worried but thankfully Dr Tebbi has stomped out my main fear.
Im off to make some coffee and since this place is like the Marie Celeste I'll get it all to myself!
Thanks for checking up on us and sorry I was such a wuss last night, but this really does suck.
Sunday, August 19, 2007
I hate this shit.
Scott is fast asleep connected to his pole but no antibiotics yet (grrrrrrr!) and since Im not exactly known for my patience (its a good job Im not Dr Kildare then isnt it - Lorna may be the only one who has a clue what that means) I am on the verge of trotting off and boiling someones bunny.
He is too tired and that is what worries me, tired and no appetite or thirst. I am worried and I dont do stress well. My chest hurts and my head is thumping, it even hurts to look through my eyes.
His temperature has dropped so goodness knows what is going on. I am waiting for the bloodwork to come back, this will either send me into full scale meltdown or will bring a big stupid smile to my face. Scratch that, the nurse has just come in and told me it hasnt even been sent to the lab yet and it was drawn almost 2 hours ago. Blood cultures have been done but final results take 72 hours.
I also have an ache as this will be the first year I havent been able to see my beautiful son off for his first day back at school. It hurts a lot and I am very sorry Derry that I cant be there for you, I'll be thinking of you baby and cant wait to hear all about it and how much school sucks and how nerdy your teachers are and how David gave you a hard time and made you tuck your shirt in. Im sorry Derry, I love you so much and this is breaking my heart. But we'll be back home real soon.
Well thats all for now constant reader (channeling Steven King makes me feel important).
Goodnight.
He is too tired and that is what worries me, tired and no appetite or thirst. I am worried and I dont do stress well. My chest hurts and my head is thumping, it even hurts to look through my eyes.
His temperature has dropped so goodness knows what is going on. I am waiting for the bloodwork to come back, this will either send me into full scale meltdown or will bring a big stupid smile to my face. Scratch that, the nurse has just come in and told me it hasnt even been sent to the lab yet and it was drawn almost 2 hours ago. Blood cultures have been done but final results take 72 hours.
I also have an ache as this will be the first year I havent been able to see my beautiful son off for his first day back at school. It hurts a lot and I am very sorry Derry that I cant be there for you, I'll be thinking of you baby and cant wait to hear all about it and how much school sucks and how nerdy your teachers are and how David gave you a hard time and made you tuck your shirt in. Im sorry Derry, I love you so much and this is breaking my heart. But we'll be back home real soon.
Well thats all for now constant reader (channeling Steven King makes me feel important).
Goodnight.
The Fat Man Sang too quick.
Well, it seems the fat guy spoke too soon. Scott's fever returned today. Then late this afternoon spiked up to 100.7-101.1, depending on which thermometer we wanted to trust. A call to the hospital and Doc Wynn confirmed what we knew - bring him in right away.
So we're now here at St. Joe's with Scott checked in to room 237. He's not even accessed yet, but will be soon. After that will be some bloodwork and bacterial cultures. IV fluids and IV antibiotics.
Will post more when we know more. He'll be here at least 48 hours.
So we're now here at St. Joe's with Scott checked in to room 237. He's not even accessed yet, but will be soon. After that will be some bloodwork and bacterial cultures. IV fluids and IV antibiotics.
Will post more when we know more. He'll be here at least 48 hours.
Saturday, August 18, 2007
Shoppin and Skatin'
Scott felt a bit better again today, although he still says he has a "sore" stomach. It seems the fever worry has abated a bit today, and hopefully is gone. We did get him out today for about 5 hours. He went along to Derry's "assessment" skate and then we went on to the mall and Toys R Us for a bit of shopping. Scott needed some new shorts and knickers, as he's packed on a few pounds and was up to 92 Thursday at the clinic.
He is now exhausted and fallen asleep on the sofa. Just waiting until he has to be awaken for his 6mp. Hopefully he sleep sound tonight. It just seems something isn't "right" with him, like the cumulative effects are taking their toll on his body and the constant mental stress of worry if he's going to be sick or if we'll have to cart him off to the hospital - and if so, just what may be wrong. It is entirely too much for a kid to be asked to deal with emotionally.
Derry has his last "free" night tonight, as school starts back on Monday. He did quite well on his skate today. He's obviously improved his speed forward and backward since the spring skate. It will be the week after Labor Day before we know if he's slotted on a team this fall. Keeping our fingers crossed for that issue as well.
We are also hoping and crossing our fingers and toes for our little friend JJ. She's now across the Bay at All Children's Hospital in the preparation stage for her Stem Cell Transplant, which is due this coming Wednesday. We've come to know little JJ and her mom Marie quite well, as her diagnosis came along within days of Scott's. Transplant is a very scary ordeal, and we hope all goes well with her this coming week.
He is now exhausted and fallen asleep on the sofa. Just waiting until he has to be awaken for his 6mp. Hopefully he sleep sound tonight. It just seems something isn't "right" with him, like the cumulative effects are taking their toll on his body and the constant mental stress of worry if he's going to be sick or if we'll have to cart him off to the hospital - and if so, just what may be wrong. It is entirely too much for a kid to be asked to deal with emotionally.
Derry has his last "free" night tonight, as school starts back on Monday. He did quite well on his skate today. He's obviously improved his speed forward and backward since the spring skate. It will be the week after Labor Day before we know if he's slotted on a team this fall. Keeping our fingers crossed for that issue as well.
We are also hoping and crossing our fingers and toes for our little friend JJ. She's now across the Bay at All Children's Hospital in the preparation stage for her Stem Cell Transplant, which is due this coming Wednesday. We've come to know little JJ and her mom Marie quite well, as her diagnosis came along within days of Scott's. Transplant is a very scary ordeal, and we hope all goes well with her this coming week.
Friday, August 17, 2007
Riding The Low-grade wave
Scott is again riding the scary wave of a low-grade fever. It makes for a worrisome day (or days). Docs already called and the standard "if it reaches 100.5, you have to come in" rule stands (as always).
Trying to keep him drinking lots of fluids, as if he doesn't, he'll slightly dehydrate and temp will spike upward. So, the waiting game is on.
The waiting game is a large part of this whole process. Seem to be waiting for one thing or another most of the time. Just hoping not to have an admission on the last weekend before school starts.
Trying to keep him drinking lots of fluids, as if he doesn't, he'll slightly dehydrate and temp will spike upward. So, the waiting game is on.
The waiting game is a large part of this whole process. Seem to be waiting for one thing or another most of the time. Just hoping not to have an admission on the last weekend before school starts.
Thursday, August 16, 2007
To our multitude of UK readers (all 3 of you) ...
BBC4 at 8pm tonight, A Lion in the House -
'A LION IN THE HOUSE follows the stories of five exceptional children and their families as they battle pediatric cancer. From the trauma of diagnosis to the physical toll of treatment, this series documents the stresses that can tear a family apart as well as the courage of children facing the possibility of death with honesty, dignity and humor. As the film compresses six years into one narrative, it puts viewers in the shoes of parents, physicians, nurses, siblings, grandparents and social workers who struggle to defeat an indiscriminate and predatory disease. '
'A LION IN THE HOUSE follows the stories of five exceptional children and their families as they battle pediatric cancer. From the trauma of diagnosis to the physical toll of treatment, this series documents the stresses that can tear a family apart as well as the courage of children facing the possibility of death with honesty, dignity and humor. As the film compresses six years into one narrative, it puts viewers in the shoes of parents, physicians, nurses, siblings, grandparents and social workers who struggle to defeat an indiscriminate and predatory disease. '
Bloodwork and lights at ends of tunnels!
Scott had clinic this morning, just bloodwork no chemo. We were all basket cases for sure, worried sick about what the results would be, however everything looked fine, well fine for a cancer patient anyway!
wbc -> 3.1
hgb -> 8.8
plt -> 222
anc -> 1922
He did have a low grade fever which we'll be keeping an eye on, it was 99.6, if it goes above 100.4 he will have to be admitted for testing and a mandatory 48 hr stay.
Scott is still very lethergic and has a pain that 'migrates'.
I talked with Mr. Wallace this morning, Scotts lovely Guidance Teacher, and he is going to help us out with some books to use at home for the next couple of months, we then hope to ease Scott back into school sometime in early maintenance. So for the time being, like David said earlier, we will be homeschooling Scott but I most certainly am no teacher and neither do I particularly want to be. Scott is a kid and we want him around other kids, not stuck at home with his crazy old mother. But for now the time is not right.
Tomorrow, if Scott is up to it, we will go and visit his old school and meet the teachers who have been assigned to him. It will be a wonderful feeling and Im getting a bit weepy just thinking about it. Light at the end of the tunnel. Normal kid stuff on the horizon. YAY!!!!!
Before I go, thank you to everyone who signs our blog and thank you for all your messages of support. Thank you to our chemo angels, we are so pleased to have you onboard supporting Scott. Thank you to Scott's friend, Brandon, he is such a honey! Brandon comes around and plays with Scott like nothing has changed, most of Scotts other friends didnt stick around, but not Brandon. He's a true friend and a great kid.
Oh and Brandon, if you are reading this, which you're probably not, but your Mom and Dad might be, Scott has been given the okay to get back on his blades!!!! I am so excited about this. Maybe in a few days when he is feeling a bit more normal you guys can tear up the road a little, I even have some home made ramps!
from Hot Rod ...
"Did you reinforce the take-off ramp?"
"Nah, we didnt have time."
LOL
wbc -> 3.1
hgb -> 8.8
plt -> 222
anc -> 1922
He did have a low grade fever which we'll be keeping an eye on, it was 99.6, if it goes above 100.4 he will have to be admitted for testing and a mandatory 48 hr stay.
Scott is still very lethergic and has a pain that 'migrates'.
I talked with Mr. Wallace this morning, Scotts lovely Guidance Teacher, and he is going to help us out with some books to use at home for the next couple of months, we then hope to ease Scott back into school sometime in early maintenance. So for the time being, like David said earlier, we will be homeschooling Scott but I most certainly am no teacher and neither do I particularly want to be. Scott is a kid and we want him around other kids, not stuck at home with his crazy old mother. But for now the time is not right.
Tomorrow, if Scott is up to it, we will go and visit his old school and meet the teachers who have been assigned to him. It will be a wonderful feeling and Im getting a bit weepy just thinking about it. Light at the end of the tunnel. Normal kid stuff on the horizon. YAY!!!!!
Before I go, thank you to everyone who signs our blog and thank you for all your messages of support. Thank you to our chemo angels, we are so pleased to have you onboard supporting Scott. Thank you to Scott's friend, Brandon, he is such a honey! Brandon comes around and plays with Scott like nothing has changed, most of Scotts other friends didnt stick around, but not Brandon. He's a true friend and a great kid.
Oh and Brandon, if you are reading this, which you're probably not, but your Mom and Dad might be, Scott has been given the okay to get back on his blades!!!! I am so excited about this. Maybe in a few days when he is feeling a bit more normal you guys can tear up the road a little, I even have some home made ramps!
from Hot Rod ...
"Did you reinforce the take-off ramp?"
"Nah, we didnt have time."
LOL
Tuesday, August 14, 2007
Well it’s been two days since my last post and I wish I could be telling you all how much better Scott is feeling however he is still thoroughly exhausted, very quiet and just not himself at all. I am worried as usually by now (almost 6 days past chemo) he should be starting to show signs of recovery. There is not much more I can say about this without getting completely depressing, lets just hope tomorrow brings a better day.
Oh and also, some good news (YAY!), Derry was on the telly tonight! He has been at ‘extreme power skating’ camp the last 5 weeks being trained by this crazy French Canadian NHL referee named Jonny Murray. He is a real nice guy but kind of scary too. Having said that though he has been very sweet with Scott, he understands only too well what leukemia can do to a kid, Coach Jonny’s nephew also had ALL. He said that the next time we get Scott on the ice we have to call him and he will come and skate with him. So anyway, Bay News 9 was down at the rink today filming the kids and then they did an interview with Coach Jonny. This was all shown tonight and we saw Derry looking very cool speeding down the ice, looking uncannily like Wayne Gretsky it has to be said. I am so proud!
I would also like to take this opportunity to thank my good friend Stephanie Krupa for all her help. Without her Derry wouldnt have been able to do the hockey camp, what with me still not having a driving licence and Scott being ill, well it just wouldnt have been possible. Stephanie stepped in to help, she picks Derry up and takes him to the forum, she helps him with his skates and keeps an eye on him for me. Thank you Stephanie, we appreciate your support very much indeed.
And now for something completely different.
Here is Springsteen; intimidating the bin man….
Oh and also, some good news (YAY!), Derry was on the telly tonight! He has been at ‘extreme power skating’ camp the last 5 weeks being trained by this crazy French Canadian NHL referee named Jonny Murray. He is a real nice guy but kind of scary too. Having said that though he has been very sweet with Scott, he understands only too well what leukemia can do to a kid, Coach Jonny’s nephew also had ALL. He said that the next time we get Scott on the ice we have to call him and he will come and skate with him. So anyway, Bay News 9 was down at the rink today filming the kids and then they did an interview with Coach Jonny. This was all shown tonight and we saw Derry looking very cool speeding down the ice, looking uncannily like Wayne Gretsky it has to be said. I am so proud!
I would also like to take this opportunity to thank my good friend Stephanie Krupa for all her help. Without her Derry wouldnt have been able to do the hockey camp, what with me still not having a driving licence and Scott being ill, well it just wouldnt have been possible. Stephanie stepped in to help, she picks Derry up and takes him to the forum, she helps him with his skates and keeps an eye on him for me. Thank you Stephanie, we appreciate your support very much indeed.
And now for something completely different.
Here is Springsteen; intimidating the bin man….
Sunday, August 12, 2007
It’s been a pretty bleak weekend. Scott is going through the motions, he is taking all his pills, he is eating, he is watching a little TV, but there is a great tiredness and even worse, immense sadness, in his eyes.
He has slept a lot, he is very pale and only talks when spoken to, and even then his voice is only a whisper. There are no smiles; he doesn’t even make eye contact. He seems lost in his thoughts, a place I really don’t want him to be on his own.
He has slept a lot, he is very pale and only talks when spoken to, and even then his voice is only a whisper. There are no smiles; he doesn’t even make eye contact. He seems lost in his thoughts, a place I really don’t want him to be on his own.
Friday, August 10, 2007
Another infusion week down
Scott got his IV vincristine and doxorubicin yesterday. His ANC was up to 900 and everything else was okay in his blood work. That is the next to last doxorubicin. The dose he gets in 3 weeks will be the last dose he ever gets in his lifetime. This is regardless of whatever may happen in the future. That's a double-edged sword. Good it is done. Scary as hell that he's had as much as any doctor will allow in his lifetime due to its toxicity.
Such are the train of thoughts going through this.
The doctors have said it is okay for Scott to go back to school.
We tend to disagree. His counts drop below 500 during every cycle of treatment. The very same docs won't release a kid from the hospital with a count below 500. Yet it is okay for him to trot off to the largest breeding ground for bugs/colds, etc in the same condition? I'm a logical guy, and no type of logic works with those parameters.
Long story short, Scott will be home schooled this year.
Such are the train of thoughts going through this.
The doctors have said it is okay for Scott to go back to school.
We tend to disagree. His counts drop below 500 during every cycle of treatment. The very same docs won't release a kid from the hospital with a count below 500. Yet it is okay for him to trot off to the largest breeding ground for bugs/colds, etc in the same condition? I'm a logical guy, and no type of logic works with those parameters.
Long story short, Scott will be home schooled this year.
Wednesday, August 8, 2007
Our little drummer boy
Thank you to all our friends and family for helping make Scotts birthday so much fun for him. We bought these drums for Scott with the birthday money he recieved from you all, and although he has about as much musical talent and rhythm as a slug he seems to be enjoying them very much. We also thought that it would be great therapy for him, both mentally and physically, however the rest of us may well need a different kind of therapy before too much longer!
Thank you also to our chemo angels for bombarding Scott with birthday cards and to Mr Wallace, Mrs Shields and Mrs Stites from Mintz Elementary for remembering Scotts birthday with a great big cookie and a gift card.
One last thank you to Papa and Grand momma for yet another box of divine cookies which arrived this afternoon. They were about the only calories Scott ate today so thank you.
Scott is back in the clinic tomorrow for blood work, if his counts are above 750 he will have vincristine and doxorubicon, he will also start back on the steroids and chemo at home. He hates all this medication and has been going between anger and tears all day. All he wants is to be able to muck about outside on his rollerblades, wrestle with his friends in the yard, just normal kid stuff. Thats all.
We will come through this though. Scotts body will heal and hopefully my heart will too.
Our Tre Cool wanabee ....
Thank you also to our chemo angels for bombarding Scott with birthday cards and to Mr Wallace, Mrs Shields and Mrs Stites from Mintz Elementary for remembering Scotts birthday with a great big cookie and a gift card.
One last thank you to Papa and Grand momma for yet another box of divine cookies which arrived this afternoon. They were about the only calories Scott ate today so thank you.
Scott is back in the clinic tomorrow for blood work, if his counts are above 750 he will have vincristine and doxorubicon, he will also start back on the steroids and chemo at home. He hates all this medication and has been going between anger and tears all day. All he wants is to be able to muck about outside on his rollerblades, wrestle with his friends in the yard, just normal kid stuff. Thats all.
We will come through this though. Scotts body will heal and hopefully my heart will too.
Our Tre Cool wanabee ....
Tuesday, August 7, 2007
It's official, this ordeal has made us insane.
There is no other explanation for this being Scott's "main" birthday present. It's that exact set, except his is black.
And set up in OUR bedroom.
He can play from 8:00 a.m - 4:00 p.m., Monday-Friday (excluding holidays or when I'm on vacation).
Monday, August 6, 2007
It's Skittles Birthday!
Happy Birthday Scotty! Remember, no presents until I get home!
Scott is 11 today, so he's getting old.
Scott is 11 today, so he's getting old.
Sunday, August 5, 2007
Clear (er) eyes
Luckily Scott did not awake with a crusted over, red, goopy eye. It is still somewhat bloodshot, but certainly isn't pinkeye. That is a big relief.
Just wanted to update here. Now we are just dealing with an anxious Scott awaiting his birthday tomorrow, and he keeps hoping nothing goes wrong or he doesn't get a fever. Crossing our fingers for a good day!
Just wanted to update here. Now we are just dealing with an anxious Scott awaiting his birthday tomorrow, and he keeps hoping nothing goes wrong or he doesn't get a fever. Crossing our fingers for a good day!
Saturday, August 4, 2007
Scott may be getting pink eye. It doesnt hurt or itch and isnt goopy or swollen but it is definately pink at the outer edge of his eye. The doctor said to 'sleep on it' and see how its looking in the morning, if it is pink eye then he reckons we will know for sure after a nights sleep.
This we do not need 36 hours before his birthday. After all he has been through this year it would be very nice to have a hospital and hassle free birthday, especially after the disaster that befell us on Derrys birthday.
A friend of mine used to laugh and say "we are doomed", well that really is how we in this household have been feeling lately.
We'll just have to wait and see what tomorrow brings.
This we do not need 36 hours before his birthday. After all he has been through this year it would be very nice to have a hospital and hassle free birthday, especially after the disaster that befell us on Derrys birthday.
A friend of mine used to laugh and say "we are doomed", well that really is how we in this household have been feeling lately.
We'll just have to wait and see what tomorrow brings.
Thursday, August 2, 2007
Clinic.
Scott had another nice clinic visit this week. David took him in about 7.30am, he had a finger prick then back home by just after 9am. No leg shots or chemo. Next week if his bloodwork is okay he will have another shot of doxorubicon and vincristine, then 3 weeks later his very last dox. He will have used up his lifetimes allowance of this drug, no more ever in his life. The only medication he will take today is 1 little while pill for his pox. Yay! Tomorrow we start a different pill which he will take until the end of treatment, a preventative measure against more shingles. However, this pill is blue and Scott has never had blue pills before, he isnt happy about it one little bit.
His anc this morning was 390, critical neutropenia but great all the same.
Hgb was 8.5 and platelets 166. The platelet king rides again.
His anc this morning was 390, critical neutropenia but great all the same.
Hgb was 8.5 and platelets 166. The platelet king rides again.
Wednesday, August 1, 2007
Chemo Angels.
A few weeks ago I signed Scott up with a wonderful volunteer organization called Chemo Angels. The aim of Chemo Angels is to brighten up the lives of IV cancer patients, they do this through regular communication and encouragement, with letters and cards and small gifts. I know of several children who are with this program and believed it would be great for Scott too.
Scott has received more mail in the last 6 months than he has received in his entire life and we are grateful and thankful for every single card, letter, gift and box of yummy cookies from Atlanta. However, over time, and quite understandably so, his mail did start to thin out quite considerably, so when I read of this organization which send mail to cancer patients I knew it was for Scott.
Scott now has two chemo angels and what amazing and kind people they are. We have Angel David and his family from Maine (where the coon cats come from!!, see photo, any excuse for a Springsteen picture!), and Angel Laura and her family from Michigan. Both will be sending encouragement, letters and small gifts to Scott over the coming year. Remember, these people are volunteers, the cards, the letters, the gifts, the stamps, all paid for out of their own pockets.
We have been receiving our angel mail now for about three weeks, every few days there is something for Scott from either Angel Laura or Angel David, and really, its not just about ‘getting stuff’, yes he LOVES to get his parcels, many times it is the most exciting thing to happen all day, but Scott finds it incredible that perfect strangers (although not for long) would be willing to write to him, to send him presents and photographs and make him laugh and smile. This is all good for his soul, man! LOL. So anyway, to cut a long story short, our Chemo Angels rock and we are very grateful that these good folks picked our Scotty to watch over for the coming year.
Thank you very much Angel Laura and Angel David.
Scotty, 1 year ago, with a goofy smile and eyebrows!! and a rather mangy looking Springsteen....
Scott has received more mail in the last 6 months than he has received in his entire life and we are grateful and thankful for every single card, letter, gift and box of yummy cookies from Atlanta. However, over time, and quite understandably so, his mail did start to thin out quite considerably, so when I read of this organization which send mail to cancer patients I knew it was for Scott.
Scott now has two chemo angels and what amazing and kind people they are. We have Angel David and his family from Maine (where the coon cats come from!!, see photo, any excuse for a Springsteen picture!), and Angel Laura and her family from Michigan. Both will be sending encouragement, letters and small gifts to Scott over the coming year. Remember, these people are volunteers, the cards, the letters, the gifts, the stamps, all paid for out of their own pockets.
We have been receiving our angel mail now for about three weeks, every few days there is something for Scott from either Angel Laura or Angel David, and really, its not just about ‘getting stuff’, yes he LOVES to get his parcels, many times it is the most exciting thing to happen all day, but Scott finds it incredible that perfect strangers (although not for long) would be willing to write to him, to send him presents and photographs and make him laugh and smile. This is all good for his soul, man! LOL. So anyway, to cut a long story short, our Chemo Angels rock and we are very grateful that these good folks picked our Scotty to watch over for the coming year.
Thank you very much Angel Laura and Angel David.
Scotty, 1 year ago, with a goofy smile and eyebrows!! and a rather mangy looking Springsteen....
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