I hope this link works...
www.niagarathisweek.com/news/article/284932
Saturday, October 31, 2009
Cerebella testing
Sometimes I am amazed at the absolute stupidity here. Lyric has been going through chemo for the last 3 days.. and the protocol this time is only 5 days and it is not as aggressive as the first 2. However, the one drug he is on they must preform a cerebella test before administering the chemo.
The part I am bothered about is the night dosage at 11 pm.. Lyric is sleeping and tired from the day and they wake him up to perform this test. They make him walk a straight line, touch his nose, then the Docs finger then his nose, then the Doc's finger again.. but for the last 3 nights Lyric can barely perform these tests he is so tired and actually still sleeping. I have to spend 15 minutes getting him to touch the Doc's finger from his nose. And of course it scares the bejesus out of me because I think he's got neurotoxicity. The test is NOT accurate at all. It worries me that they go ahead giving the drug when he struggles to perform a simple task. He is so sleepy he can't even hear you. He continues to lye down and you have to get him back up again. It's terrible.
So last nights test I was upset. I walked out to the Nurses station and voiced my concern. They think it is a valid complaint and are going to see about changing the time on his chemo administration by an hour or so. But apparently it's hard to do because it's a written protocol. But I don't care, I will play mama bear if I have to and get this changed. It is not right. Stupid in my opinion.
Other than that drama, yesterday the kids on the ward paraded around for Halloween. It was so cute. I have some photos that I will post once I am home. Lyric was a 1930's gangster and I was a flapper. It was a really cute combination and everyone loved it. He got lots of treats, and Cadbury generously donated a LARGE bag of candy (including several bags of Halls??)
He is holding up well through this round, has some bouts of nausea and has lost his appetite. But I am not worried, this is the usual during chemo and once he's done he's back to normal.
Avery and Lyric's dad are visiting today and we are all dressing up for Halloween... it should be fun. Lyric has also not been neutropenic this stay, but looks like he will be as of tomorrow.
While we were at home this past weekend Lyric went to school Monday, his first day of school. He hesitated going afraid of how his friends would view him. But I took him anyways and stayed with him and he was fine. He enjoyed the day seeing his friends and being in the school environment.
Avery is doing well, she's as sweet as pie and I miss seeing her. Hopefully we will be going home Monday and we will STAY home until the next round 3 weeks later.
I also think we will be here at Christmas as well.. which will suck.
The part I am bothered about is the night dosage at 11 pm.. Lyric is sleeping and tired from the day and they wake him up to perform this test. They make him walk a straight line, touch his nose, then the Docs finger then his nose, then the Doc's finger again.. but for the last 3 nights Lyric can barely perform these tests he is so tired and actually still sleeping. I have to spend 15 minutes getting him to touch the Doc's finger from his nose. And of course it scares the bejesus out of me because I think he's got neurotoxicity. The test is NOT accurate at all. It worries me that they go ahead giving the drug when he struggles to perform a simple task. He is so sleepy he can't even hear you. He continues to lye down and you have to get him back up again. It's terrible.
So last nights test I was upset. I walked out to the Nurses station and voiced my concern. They think it is a valid complaint and are going to see about changing the time on his chemo administration by an hour or so. But apparently it's hard to do because it's a written protocol. But I don't care, I will play mama bear if I have to and get this changed. It is not right. Stupid in my opinion.
Other than that drama, yesterday the kids on the ward paraded around for Halloween. It was so cute. I have some photos that I will post once I am home. Lyric was a 1930's gangster and I was a flapper. It was a really cute combination and everyone loved it. He got lots of treats, and Cadbury generously donated a LARGE bag of candy (including several bags of Halls??)
He is holding up well through this round, has some bouts of nausea and has lost his appetite. But I am not worried, this is the usual during chemo and once he's done he's back to normal.
Avery and Lyric's dad are visiting today and we are all dressing up for Halloween... it should be fun. Lyric has also not been neutropenic this stay, but looks like he will be as of tomorrow.
While we were at home this past weekend Lyric went to school Monday, his first day of school. He hesitated going afraid of how his friends would view him. But I took him anyways and stayed with him and he was fine. He enjoyed the day seeing his friends and being in the school environment.
Avery is doing well, she's as sweet as pie and I miss seeing her. Hopefully we will be going home Monday and we will STAY home until the next round 3 weeks later.
I also think we will be here at Christmas as well.. which will suck.
Tuesday, October 27, 2009
Back from being on vacation...
It's funny, we arrived at the hospital today and ran into a Doctor we know, and she said Oh, your back again? I said no, we were on vacation and just came back home... lol, she laughed. The hospital feels more like my home than my own at this point which is truly wrong.
Lyric had his bone marrow test and Lumbar Puncture today, we should have the results back tomorrow. I am praying and hoping they are good! We are going to start his chemo tomorrow, and this round only lasts 5 days. So lets pray nothing else will keep him there. We are now in a room with a screaming baby and I have a chair bed that has a big metal bar sticking out of the middle of it. The hospital is full full full right now and they are short beds and rooms.. sigh.
Things are great, we enjoyed the weekend at home. Did a lot of visiting with friends, went to the pumpkin patch, slept soooo nicely in my own bed and didn't seem to get anything I wanted to get done, done. Oh well.. 3 days was not long enough. It was very hard to go back.
Lyric will also be in the Niagara This Week Newspaper, there is another upcoming fundraiser for us being held my Picasso's... my awesome Salon! Very exciting and I am so grateful and thankful to have such wonderful people in my life to help us... so so thankful.
helloo, it,s Lyric. i,had a nice time at home!!!
Lyric just decided to share there for a moment.. short and sweet of course. hehe.
Lyric had his bone marrow test and Lumbar Puncture today, we should have the results back tomorrow. I am praying and hoping they are good! We are going to start his chemo tomorrow, and this round only lasts 5 days. So lets pray nothing else will keep him there. We are now in a room with a screaming baby and I have a chair bed that has a big metal bar sticking out of the middle of it. The hospital is full full full right now and they are short beds and rooms.. sigh.
Things are great, we enjoyed the weekend at home. Did a lot of visiting with friends, went to the pumpkin patch, slept soooo nicely in my own bed and didn't seem to get anything I wanted to get done, done. Oh well.. 3 days was not long enough. It was very hard to go back.
Lyric will also be in the Niagara This Week Newspaper, there is another upcoming fundraiser for us being held my Picasso's... my awesome Salon! Very exciting and I am so grateful and thankful to have such wonderful people in my life to help us... so so thankful.
helloo, it,s Lyric. i,had a nice time at home!!!
Lyric just decided to share there for a moment.. short and sweet of course. hehe.
Friday, October 23, 2009
Home for the weekend!!
I was not expecting it at all... I really did think we were staying for another week at least. They got back the results from the MRI and it was clear. The dentist had told us the inflammation and pain and possibly the lymph node could have been a reaction to his molars that are pushing through. So all this time, the last 16 days we could have been at home. But they wanted to be over cautious and treat him with antibiotic after lovely antibiotic. I really do hope that he's not immune to them for when he really needs them!
We packed up (my goodness I have way too many things at the hospital..) and headed home without getting plagued by a fever this time. We went out to dinner, Avery brought a friend and they played. Lyric is NOT neutropenic right now, his counts are coming up nicely so we have a bit more freedom! Lyric will have a sleepover tomorrow night with his good friend Callum hopefully, he so desperately misses his friends and play time. Poor guy.
The house needs to be cleaned.. badly. It's stinky, and there is so much to do. I may just find someone to come while I'm in hospital for long periods of time because it's way too much for me to come back to with such little time.
I'm going out with my friend Robin tonight, so I better get a move on and make myself look half decent.
Oh, by the way.. I'm reading this FANTASTIC book called You Are What You Eat, By Gillian McKeith (apparently the worlds top Nutritionist) .. if you want to feel good, understand and read your vitamin deficiencies, and learn how to eat healthy it's a great book in understanding food and how important it is for our bodies to function at it's optimum. It's not a difficult or long read. It's quite interesting learning the different types of stools and what they actually mean... lol
We packed up (my goodness I have way too many things at the hospital..) and headed home without getting plagued by a fever this time. We went out to dinner, Avery brought a friend and they played. Lyric is NOT neutropenic right now, his counts are coming up nicely so we have a bit more freedom! Lyric will have a sleepover tomorrow night with his good friend Callum hopefully, he so desperately misses his friends and play time. Poor guy.
The house needs to be cleaned.. badly. It's stinky, and there is so much to do. I may just find someone to come while I'm in hospital for long periods of time because it's way too much for me to come back to with such little time.
I'm going out with my friend Robin tonight, so I better get a move on and make myself look half decent.
Oh, by the way.. I'm reading this FANTASTIC book called You Are What You Eat, By Gillian McKeith (apparently the worlds top Nutritionist) .. if you want to feel good, understand and read your vitamin deficiencies, and learn how to eat healthy it's a great book in understanding food and how important it is for our bodies to function at it's optimum. It's not a difficult or long read. It's quite interesting learning the different types of stools and what they actually mean... lol
Wednesday, October 21, 2009
Tests... more tests
The dentists have cleared Lyric of any issues regarding his teeth.. they said there are lots of baby molars that are about to be lost soon as the big molars are pushing through and that may be causing the pain while he's eating things like raw carrots.
They are still concerned about a lymph node that is still swollen and are sure that is the site of infection. They are arranging yet another MRI hopefully for today. He is still on antibiotics.. I think it's day 14 now.. sigh.. poor kid. His counts are coming up nicely and they are hoping he will be ready to have his bone marrow test tomorrow. If not, it will be next Tuesday again.
Other than that things are great. Living in a hospital. whoo. hehe.
And for you folks out there reading this, please feel free to share anything in the comments section. I almost feel like I'm talking to no one.. lol
They are still concerned about a lymph node that is still swollen and are sure that is the site of infection. They are arranging yet another MRI hopefully for today. He is still on antibiotics.. I think it's day 14 now.. sigh.. poor kid. His counts are coming up nicely and they are hoping he will be ready to have his bone marrow test tomorrow. If not, it will be next Tuesday again.
Other than that things are great. Living in a hospital. whoo. hehe.
And for you folks out there reading this, please feel free to share anything in the comments section. I almost feel like I'm talking to no one.. lol
Monday, October 19, 2009
Another week
Lyric will be seeing the dentist tomorrow, and the infectious disease folks... they will determine what is going on with his mouth and then what course of treatment because what we are doing now is not fully treating the infection. Looks like we will not be having the bone marrow test until Thursday, and we have to wait until his infection is gone and his numbers are a bit higher to start the chemo. Crappy. Just plain crappy. Of course they won't give us the pill form antibiotic cause they say it doesn't work as well as the IV one.. so we will be stuck at hospital.
The cleaning staff threw out my food from the family fridge. It was labelled as it was supposed to be. So I'm not sure what happened there but I wasn't happy to find my organics that I just bought thrown in the garbage. They reimbursed me with gift certificates for the cafeteria... mmm, yummy hospital food (uck).
I also have to look into getting a shower put into my bathroom upstairs. We only have a soaker bathtub upstairs and have to stop using the shower in the basement (and eventually rip it out) ... so if anyone knows anyone who can run a shower into my soaker tub or put in a tiled shower into the space now and who is also reasonably cheap please give me their info!
I am feeling great! Being able to get out of the hospital does wonders! I went home yesterday for a bit to do my fall cleanup in the garden... the house needs a big clean and needs to be organized. But I have no time. It bothers me to go home and see what needs to be done and I can't get to it. Oh well in time! I will have to do some Halloween decorating and get some mums... the house looks so dull!
Lyric is being James Bond for Halloween, I'm almost done getting his costume... all I need is shoes and a wig that resembles Peirce Brosnan... which I can't seem to find. Although with Lyric's bald head I could always draw it on...lol. Avery is being Barbie Mariposa... every year she's a barbie, princess or something really girlie. I can't wait until she's something a little more fun, but we have many years of costumes so it will come I'm sure!
The cleaning staff threw out my food from the family fridge. It was labelled as it was supposed to be. So I'm not sure what happened there but I wasn't happy to find my organics that I just bought thrown in the garbage. They reimbursed me with gift certificates for the cafeteria... mmm, yummy hospital food (uck).
I also have to look into getting a shower put into my bathroom upstairs. We only have a soaker bathtub upstairs and have to stop using the shower in the basement (and eventually rip it out) ... so if anyone knows anyone who can run a shower into my soaker tub or put in a tiled shower into the space now and who is also reasonably cheap please give me their info!
I am feeling great! Being able to get out of the hospital does wonders! I went home yesterday for a bit to do my fall cleanup in the garden... the house needs a big clean and needs to be organized. But I have no time. It bothers me to go home and see what needs to be done and I can't get to it. Oh well in time! I will have to do some Halloween decorating and get some mums... the house looks so dull!
Lyric is being James Bond for Halloween, I'm almost done getting his costume... all I need is shoes and a wig that resembles Peirce Brosnan... which I can't seem to find. Although with Lyric's bald head I could always draw it on...lol. Avery is being Barbie Mariposa... every year she's a barbie, princess or something really girlie. I can't wait until she's something a little more fun, but we have many years of costumes so it will come I'm sure!
Saturday, October 17, 2009
The weekend.
We are still at the hospital. Yesterday, they did a bone scan on Lyric's cheek and while they were at it they decided to do a full body scan. They give Lyric some RADIOACTIVE material in his IV to track the blood flow and it helps the machine see the bones. Ya, that's great give my son some radioactive material... it can't be any worse than the chemo. Ugh. Then she says to me his pee will be radioactive for a couple days...oh, great. thanks.
They are still concerned that there is something going on with the cheek. You can still feel a bump... and since the antibiotics have lessened the pain and inflammation they think it's an infection for sure. But for some reason, it's not going away too quickly. So I guess we have to wait until Monday to get the results.. Doc's don't work on weekends. Cause apparently people don't get sick on weekends. You should see this place, it's so dead.
Lyric and I have had some LOA's, we can get out for about 8 hours in the afternoon. So we've gone home a couple times, but other days we stick around here cause the drive is too far everyday. Yesterday afternoon I took Lyric to see Where Wild Things Are. He wanted to go so I checked into how busy it would be and it wasn't at all. So we had popcorn and enjoyed the fun film. So cute. Afterwards we went to this great store called the Horn Of Plenty I found not so far away to stock up on some more healthy food. Lyric has pretty much boycotted the hospital food, which is good because I don't want him eating it anyways!
We are waiting for his counts to come up, and according to his Oncologist the more chemo you get the longer it takes for the counts to come up. So I hope they come up this week to get this next chemo round underway.
Lyric's been great, we are enjoying our time together getting out a bit. Today we are going to my Dad's where Avery is staying for the weekend to spend some time.
Oh, and I also wanted to mention there is another benefit being held for Lyric in November by some wonderful folks from my Salon, Picasso's. They have organized a night with bands and all sorts of stuff.. I will post the details later as I don't have access to them at this moment.
I hope everyone enjoys this beautiful sunny weekend!
They are still concerned that there is something going on with the cheek. You can still feel a bump... and since the antibiotics have lessened the pain and inflammation they think it's an infection for sure. But for some reason, it's not going away too quickly. So I guess we have to wait until Monday to get the results.. Doc's don't work on weekends. Cause apparently people don't get sick on weekends. You should see this place, it's so dead.
Lyric and I have had some LOA's, we can get out for about 8 hours in the afternoon. So we've gone home a couple times, but other days we stick around here cause the drive is too far everyday. Yesterday afternoon I took Lyric to see Where Wild Things Are. He wanted to go so I checked into how busy it would be and it wasn't at all. So we had popcorn and enjoyed the fun film. So cute. Afterwards we went to this great store called the Horn Of Plenty I found not so far away to stock up on some more healthy food. Lyric has pretty much boycotted the hospital food, which is good because I don't want him eating it anyways!
We are waiting for his counts to come up, and according to his Oncologist the more chemo you get the longer it takes for the counts to come up. So I hope they come up this week to get this next chemo round underway.
Lyric's been great, we are enjoying our time together getting out a bit. Today we are going to my Dad's where Avery is staying for the weekend to spend some time.
Oh, and I also wanted to mention there is another benefit being held for Lyric in November by some wonderful folks from my Salon, Picasso's. They have organized a night with bands and all sorts of stuff.. I will post the details later as I don't have access to them at this moment.
I hope everyone enjoys this beautiful sunny weekend!
Subscribe to:
Posts (Atom)