Today has been a day of improvements, …
Today has been a day of improvements, thank goodness. Rachel's ANC has jumped from a grand total of 30 yesterday, to …
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Rach 
Hello all,
Well, Rachel's ANC has been hovering around the 700 mark for the last couple of days, which is much better (wouldn't mind it being higher, but it is better than ZERO!), but she still can't seem to shake this cold/flu thing she's got happening.
Her chest sounds absolutely horrible, you can hear all the rubbish rattling around when she breathes, and she can't even take 2 breaths without having to cough. Last night they decided to put her on oxygen to help her get her breath, as she was having a particularly hard time breathing, and was starting to frighten me with the short, gaspy breaths she was taking, almost like she was gulping for air.
She has had some awful headaches, so bad that her right eye was closing yesterday, and her throat is absolutely red raw - the doctor shone a light down it yesterday and showed me, I couldn't believe how bad it looked - almost like someone had stuck a vegetable grater down there, and rubbed it around. Needless to say, her eating has been even worse than usual - in the last week all she has eaten are ice cubes and 3 grapes. THREE grapes in a week.
She has been drinking alot of powerade too, and on Saturday they tried sneaking in a few spoonfuls of a powdered calorie supplement - well, as soon as Rachel took a mouthful she spat it right back up - she could tell straight away there was something not right, apparently it made the drink taste like "watered dog poo" (she's so charming). They have her on IV fluids through her central line, so she doesn't get dehydrated. The sooner we can get an NG tube back into her, the better.
Her temperature has also been up and down like you wouldn't believe, she goes from boiling to freezing over the space of a few minutes!
It's amazing how an everyday cold can hit a kid with cancer SO much harder than a healthy child.
Rachel had a bit of a D&M with me the otherday, regarding her treatment options - I won't go into too much detail, but the gist was she is worried that, seeing as everytime she has had this particular chemo so far she has gotten very sick afterwards, if she keeps up with this chemo at this strength, she is going to get an infection or get sick after a round of it, and she won't make it through. She pointed out that she could have the chemo again in a couple of weeks, get another serious infection and die, in which case she would have lived longer OFF treatment.
But then she doesn't want to seem like she is going out without a fight either, especially when the chemo seems to be holding the cancer at bay. She doesn't want to feel like she is 'scared' or 'giving up', like she can't handle the treatment.
I told her that NO ONE would ever think she was not handling ANYTHING - after everything she has gotten through to still be here today, I will trust any decision she makes - she is 19 years old now, it is her body, her decisions. Only she knows when she has had enough. And she is prefectly within her rights to feel scared - god, I would be petrified after an hour in her shoes! Less than an hour! I know how scared I am, and I am not the one who has thie terrible disease inside me.
And as for going out without a fight? I think anyone who has ever heard her story would agree that she has fought harder than any teenager should have to in a lifetime. If she is getting tired, then she deserves a break.
Adding to her doubts were the results of Friday's spinal - cancer cells are at 27%. The last 2 tests have shown little change, and she is starting to feel a little discouraged. We are going to continue with the weekly LP's for now, and see what happens.
So, it is no wonder the poor kids head is spinning right now. I will keep you updated on her thoughts. For now we are plugging ahead, but this bug puts a bit of a halt on things *sigh*
A tentative date for her Meth dose is Wednesday. So we will see. If she does get her Meth, she will have her next round of scans and tests (MRI, PET, CT, EKG, BMA) on Tuesday Sept 5th - a week from tomorrow. I think once we see where we are at, more decisions will be made. I hope to high heaven that we get a result of no disease progression once again, because I think that would make Rachel's mind up about staying on treatment.
So positive thoughts!
Thanks for all the messages, it is such a comfort to know there are so many people praying for our girl!
Love Linda
Visit: http://rachel.redtoenail.org
Well, Rachel's ANC has been hovering around the 700 mark for the last couple of days, which is much better (wouldn't mind it being higher, but it is better than ZERO!), but she still can't seem to shake this cold/flu thing she's got happening.
Her chest sounds absolutely horrible, you can hear all the rubbish rattling around when she breathes, and she can't even take 2 breaths without having to cough. Last night they decided to put her on oxygen to help her get her breath, as she was having a particularly hard time breathing, and was starting to frighten me with the short, gaspy breaths she was taking, almost like she was gulping for air.
She has had some awful headaches, so bad that her right eye was closing yesterday, and her throat is absolutely red raw - the doctor shone a light down it yesterday and showed me, I couldn't believe how bad it looked - almost like someone had stuck a vegetable grater down there, and rubbed it around. Needless to say, her eating has been even worse than usual - in the last week all she has eaten are ice cubes and 3 grapes. THREE grapes in a week.
She has been drinking alot of powerade too, and on Saturday they tried sneaking in a few spoonfuls of a powdered calorie supplement - well, as soon as Rachel took a mouthful she spat it right back up - she could tell straight away there was something not right, apparently it made the drink taste like "watered dog poo" (she's so charming). They have her on IV fluids through her central line, so she doesn't get dehydrated. The sooner we can get an NG tube back into her, the better.
Her temperature has also been up and down like you wouldn't believe, she goes from boiling to freezing over the space of a few minutes!
It's amazing how an everyday cold can hit a kid with cancer SO much harder than a healthy child.
Rachel had a bit of a D&M with me the otherday, regarding her treatment options - I won't go into too much detail, but the gist was she is worried that, seeing as everytime she has had this particular chemo so far she has gotten very sick afterwards, if she keeps up with this chemo at this strength, she is going to get an infection or get sick after a round of it, and she won't make it through. She pointed out that she could have the chemo again in a couple of weeks, get another serious infection and die, in which case she would have lived longer OFF treatment.
But then she doesn't want to seem like she is going out without a fight either, especially when the chemo seems to be holding the cancer at bay. She doesn't want to feel like she is 'scared' or 'giving up', like she can't handle the treatment.
I told her that NO ONE would ever think she was not handling ANYTHING - after everything she has gotten through to still be here today, I will trust any decision she makes - she is 19 years old now, it is her body, her decisions. Only she knows when she has had enough. And she is prefectly within her rights to feel scared - god, I would be petrified after an hour in her shoes! Less than an hour! I know how scared I am, and I am not the one who has thie terrible disease inside me.
And as for going out without a fight? I think anyone who has ever heard her story would agree that she has fought harder than any teenager should have to in a lifetime. If she is getting tired, then she deserves a break.
Adding to her doubts were the results of Friday's spinal - cancer cells are at 27%. The last 2 tests have shown little change, and she is starting to feel a little discouraged. We are going to continue with the weekly LP's for now, and see what happens.
So, it is no wonder the poor kids head is spinning right now. I will keep you updated on her thoughts. For now we are plugging ahead, but this bug puts a bit of a halt on things *sigh*
A tentative date for her Meth dose is Wednesday. So we will see. If she does get her Meth, she will have her next round of scans and tests (MRI, PET, CT, EKG, BMA) on Tuesday Sept 5th - a week from tomorrow. I think once we see where we are at, more decisions will be made. I hope to high heaven that we get a result of no disease progression once again, because I think that would make Rachel's mind up about staying on treatment.
So positive thoughts!
Thanks for all the messages, it is such a comfort to know there are so many people praying for our girl!
Love Linda
Visit: http://rachel.redtoenail.org
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Sending love,
Celia
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