'Twas the last day of chemo
And the captives of the room
Passed time lamenting
Hoping passing days just zoom...
Caring nurses hung toxins
Each with great care
While Emmah sat dreaming
Future days and flowing hair...
The good doctors smile
Inquiring to her condition
Always leaves me thinking
How would you be if in her position?
As the last bags hung
The ending’s finally begun
With the line close in sight
Need to just make it this night...
So to join in our fun
Do not come undone
Just top off your lungs
Say with us IT'S DONE!
We know isolation awaits
Gazing near future dates
But tomorrow's a lucky seven
It’s the day Emmah turns eleven...
(actually today by the time most of you read this)
Ahhh... the perils of late day postings, but that's when the creativeness flows best... of course you need to consider my writings here as something creative in the first place. I mean over the years of changing kids diapers I've viewed (and smelled) things that have been pushed out that could be considered creative... so it's all subjective.
Today was a good day it began like the others... we woke up.
She took her last Emend today as well as got the last of the Decadron. She decided that the Zofran wasn't working anymore, so we're stopping that one again as well. She had eased off of the eating some Thursday afternoon into evening... as in she ate nothing after the EC had left. This morning started out the same way and try as I may, I couldn't interest her in eating anything. I told her that she needs to keep on trying cuz she weighed in at 31.75kg... for the rest of the metric challenged, that's 69.9967682 pounds. So I told her that she was one cracker away from 70 pounds... 70 pounds is our personal benchmark weight or fighting weight.
The great thing about mornings is that they are followed by afternoons... I finally got her to eat a cracker and by the time evening rolled around, she was an eating fool. Another cracker... and a piece of homemade garlic bread and some of the leftover hamburger helper that she was pilfering from me. Add to that a couple sips of Coke and you have a genuine feast going on. I shouldn't make light of the fact that she's eating. Getting her to eat anything at all is a major breakthrough as eating during chemo treatments is unheard of for her.
She spent time whipping up on the social worker/teacher playing a game called SET... the family game of visual perception... so I took this opportunity to slip away and take a shower... during which time the teacher left. Feeling rejuvenated (and smelling a tad better) I took a stab at the SET game and was quickly disposed of... she whipped me too.
I know I have been dreaming of this day ever since we started in August and finally... it's upon us. As of my writing this we are a mere 11-12 hours away from the end of the chemo treadmill. I do believe it is a treadmill that Emmah (and the rest of us) will gladly step off of. Perhaps a ceremonial stomping of the empty chemo bags will be in order. Now the rescue and isolation await and Emmah is eager to go home... wanting to entirely bypass the layover at the Kohl's house. She's resting comfortably as I tap away and wrap this up...
Wonder if she's dreaming about tomorrow?
09 March, 2007
07 March, 2007
Going Quietly Into The Night...
Day -6
I hate to keep on driving a point, but for the sake of perhaps only my amusement I will... again. What a difference a day can make... well actually a few hours... five-ish to be exact.
Hmmm, can five-ish be exact?
Yesterday, Tuesday, was the start of this last leg of chemo... the proverbial carrot if you will... it marks the end of the line for the chemo. As previously mentioned... we have the dubious distinction of adding yet one more (and last) toxin getting pumped into to Emmah's little veins... Melphalan. It didn't take long for it to introduce itself... within an hour she was hugging her pink tub... a.k.a. the puke bucket... a constant friend and adversary all in one.
Previously, during her last rescue, she was taking Ativan and Benadryl to cope with the nausea... she long swore off Zofran, Kytril (and the like) claiming that they didn't work for her... Zofran and Kytril are specifically for nausea. She got to liking the Ativan and Benadryl since they make her sleepy and they allowed her, in most cases, to sleep for several hours. The draw back to that, at least from where I was sitting, was it kept her in a semi-stupor. It was acceptable to me since she was comfortable and I knew it was temporary... at least until the bulk of the nausea had passed.
They all try, and have tried, their collective bests to coax her into taking something for the nausea, but she's held steadfast and resisted their efforts. After verifying (long ago) that it wasn't a mandatory thing, I for one was not about to get on her bad side and make her take anything. She is old enough and if she feels like it wasn't working, and didn’t have to, I for one wasn’t going to push it on her… besides, if she feels that it doesn’t work, then half the battle is already lost. She was holding off on taking any Ativan Tuesday morning because Julie and the girls (a.k.a. the estrogen club… EC for short) were coming out and she didn't want to be all loopy when they were here... so she suffered until the EC went home around one in the afternoon. I had already given the nurse the heads up to administer it as soon as the EC had gone. They left, she did... and Emmah fell asleep.
Now earlier this same morning, during rounds, the doctors tried again and presented a different drug... Emend... it's taken once a day for only three days and it lasts for like a month or something and it's usually given to the older patients. Though Emmah really isn’t quite in that group, they felt she was on the cusp, but it involved talking a capsule. A what? A capsule... not available in IV form. This was met with an immediate no as Emmah has yet to learn how to swallow pills. As you might imagine, this inability has presented a whole slew of obstacles to overcome. Anyway, they went on and explained that there are three things that make up this new approach. I say new because it was new to Emmah/us. It entailed taking the Emend, getting on Zofran and adding Decadron… they said that they work best when all three are given. Emmah still rejected it. So I kinda took the “oh well” position and said ultimately she’s the one to pay the fiddler. Moving on from this point…
The EC arrive and Emmah is in full glory... rather upsetting to watch. I’m all too familiar the routine and have become somewhat immune to it, Julie on the other hand is not and I could see it was bothering her. Don’t get me wrong, it bothers me too, I’ve just seen so much of it I’m like teflon. It wasn’t the visit that Julie, or Emmah for that matter, was envisioning. With a slight detour to the parent’s lounge to pop a bag of microwave popcorn for the road, the EC was preparing to leave when we ran into someone we’ve befriended here, Sue, and we got to talking. Her daughter, Megan, who’s either 16 or 17, is in for her second transplant as well (different protocol) and had taken the Emend and was feeling great… that was enough for me. I said my good-byes to the EC and set off to inquire if the capsule could be opened up and taken mixed with something… the way Emmah likes it. You see… the ONLY way we can give a pill to Emmah is to crush it up and mix it with melted ice cream. She doesn’t like liquid meds... complaining about how they taste. Then she complains about how the crushed pills taste. She gets so worked up at times causing the meds to react as if they’ve hit a trampoline somewhere in her esophagus… in and back out. We’ve said to her time and again that there’s a reason behind learning how to swallow pills… pills generally taste bad when you crush them and by swallowing them whole, you bypass that taste. Getting her to take any kind of med orally is a major production that is usually preceded with “I wish I didn’t have to take this”.
Sorry, I digress…
I discover that the capsule can be opened and taken… fantastic! Now my next objective is selling it to Emmah… who now is starting to feel the Ativan. I figure that she’ll be less confrontational this way… less being subjective naturally. Not surprisingly she’s a tad bit resistant. In trying to coax her into this, I ascertain why she doesn’t want to give this a try. Ready for the irony here? She’s afraid that she’ll throw it back up. So I ask… What’s one more time then? To which she replies… “I’ll have to take it again and again and again until it stays down”. Makes me dizzy… I asked her what have I ever made you take that wasn’t mandatory? (The answer to that is nothing by the way… ‘cept for this time) I told her that I was putting my foot down and that we were going to give this a try. This was met with some crying and her emphatically saying that she wasn’t going to take it. I let her drift off to sleep and asked the nurse to get it all together, that we were going to do this. A couple hours lapse and now I have it all ready on the spoon with the melted ice cream complete with a cherry on top. I wake her up and slip her the mickey… and she drifts back off to sleep… but before doing so, she sez that she’s not going to take this tomorrow. Little bugger…
Jessica, the nurse practitioner, stops by like five minutes after I got it in her. She’s glad and sez all we need is it in for 30 minutes… meaning if she vomits after that 30min mark it’s safely in. She then tells me that she hopes it’s not too late and that this is more of a pre-med type thing… get it in before starting. Makes me scratch my head and think then why not Monday night with this then instead of after her chemo started Tuesday morning? I mean we were here. The upside to this capsule is that the inside is not a powder but tiny little beads (pellets, balls whatever you want to call them) about the size of a pinhead… hence no immediate taste to them. Much like certain types of the candy topping sprinkles that you might see on a cupcake… or in our house just sprinkles… sometimes eaten right out of the jar.
Well… this is kind of where we came in. With all three meds in and having napped until 6:30 in the evening, she wakes up hungry. Say again? I’m hungry… can I have something to eat? Ummm… sure, how about some crackers? She also told me that she was thirsty and wanted a Coke. Okay… whatever you want. She proceeded to eat 2/3rds of a sleeve of Club crackers and drank about half of a 20 oz. bottle of Coke... further proof that miracles do happen. Being fresh off a five hour nap, she then proceeded to stay up until about 3:30 in the morning… naturally. That also takes us to today… Wednesday… and good news… the eating continues. More crackers, more Coke, some juice, Doritos, and Lucky Charms (sans milk) and a very small taste of my breakfast of hotcakes and sausage.
By the way… in case anyone is wondering, she did take it today without any fanfare even saying that she didn’t taste it, only the ice cream (which incidentally will be vanilla tomorrow… she tried chocolate today) and she will take it tomorrow, Thursday as well. She still won’t give it (the Emend) any props saying that it was the single dose of Ativan that was enabling her to eat like that.
Oy vey!
I hate to keep on driving a point, but for the sake of perhaps only my amusement I will... again. What a difference a day can make... well actually a few hours... five-ish to be exact.
Hmmm, can five-ish be exact?
Yesterday, Tuesday, was the start of this last leg of chemo... the proverbial carrot if you will... it marks the end of the line for the chemo. As previously mentioned... we have the dubious distinction of adding yet one more (and last) toxin getting pumped into to Emmah's little veins... Melphalan. It didn't take long for it to introduce itself... within an hour she was hugging her pink tub... a.k.a. the puke bucket... a constant friend and adversary all in one.
Previously, during her last rescue, she was taking Ativan and Benadryl to cope with the nausea... she long swore off Zofran, Kytril (and the like) claiming that they didn't work for her... Zofran and Kytril are specifically for nausea. She got to liking the Ativan and Benadryl since they make her sleepy and they allowed her, in most cases, to sleep for several hours. The draw back to that, at least from where I was sitting, was it kept her in a semi-stupor. It was acceptable to me since she was comfortable and I knew it was temporary... at least until the bulk of the nausea had passed.
They all try, and have tried, their collective bests to coax her into taking something for the nausea, but she's held steadfast and resisted their efforts. After verifying (long ago) that it wasn't a mandatory thing, I for one was not about to get on her bad side and make her take anything. She is old enough and if she feels like it wasn't working, and didn’t have to, I for one wasn’t going to push it on her… besides, if she feels that it doesn’t work, then half the battle is already lost. She was holding off on taking any Ativan Tuesday morning because Julie and the girls (a.k.a. the estrogen club… EC for short) were coming out and she didn't want to be all loopy when they were here... so she suffered until the EC went home around one in the afternoon. I had already given the nurse the heads up to administer it as soon as the EC had gone. They left, she did... and Emmah fell asleep.
Now earlier this same morning, during rounds, the doctors tried again and presented a different drug... Emend... it's taken once a day for only three days and it lasts for like a month or something and it's usually given to the older patients. Though Emmah really isn’t quite in that group, they felt she was on the cusp, but it involved talking a capsule. A what? A capsule... not available in IV form. This was met with an immediate no as Emmah has yet to learn how to swallow pills. As you might imagine, this inability has presented a whole slew of obstacles to overcome. Anyway, they went on and explained that there are three things that make up this new approach. I say new because it was new to Emmah/us. It entailed taking the Emend, getting on Zofran and adding Decadron… they said that they work best when all three are given. Emmah still rejected it. So I kinda took the “oh well” position and said ultimately she’s the one to pay the fiddler. Moving on from this point…
The EC arrive and Emmah is in full glory... rather upsetting to watch. I’m all too familiar the routine and have become somewhat immune to it, Julie on the other hand is not and I could see it was bothering her. Don’t get me wrong, it bothers me too, I’ve just seen so much of it I’m like teflon. It wasn’t the visit that Julie, or Emmah for that matter, was envisioning. With a slight detour to the parent’s lounge to pop a bag of microwave popcorn for the road, the EC was preparing to leave when we ran into someone we’ve befriended here, Sue, and we got to talking. Her daughter, Megan, who’s either 16 or 17, is in for her second transplant as well (different protocol) and had taken the Emend and was feeling great… that was enough for me. I said my good-byes to the EC and set off to inquire if the capsule could be opened up and taken mixed with something… the way Emmah likes it. You see… the ONLY way we can give a pill to Emmah is to crush it up and mix it with melted ice cream. She doesn’t like liquid meds... complaining about how they taste. Then she complains about how the crushed pills taste. She gets so worked up at times causing the meds to react as if they’ve hit a trampoline somewhere in her esophagus… in and back out. We’ve said to her time and again that there’s a reason behind learning how to swallow pills… pills generally taste bad when you crush them and by swallowing them whole, you bypass that taste. Getting her to take any kind of med orally is a major production that is usually preceded with “I wish I didn’t have to take this”.
Sorry, I digress…
I discover that the capsule can be opened and taken… fantastic! Now my next objective is selling it to Emmah… who now is starting to feel the Ativan. I figure that she’ll be less confrontational this way… less being subjective naturally. Not surprisingly she’s a tad bit resistant. In trying to coax her into this, I ascertain why she doesn’t want to give this a try. Ready for the irony here? She’s afraid that she’ll throw it back up. So I ask… What’s one more time then? To which she replies… “I’ll have to take it again and again and again until it stays down”. Makes me dizzy… I asked her what have I ever made you take that wasn’t mandatory? (The answer to that is nothing by the way… ‘cept for this time) I told her that I was putting my foot down and that we were going to give this a try. This was met with some crying and her emphatically saying that she wasn’t going to take it. I let her drift off to sleep and asked the nurse to get it all together, that we were going to do this. A couple hours lapse and now I have it all ready on the spoon with the melted ice cream complete with a cherry on top. I wake her up and slip her the mickey… and she drifts back off to sleep… but before doing so, she sez that she’s not going to take this tomorrow. Little bugger…
Jessica, the nurse practitioner, stops by like five minutes after I got it in her. She’s glad and sez all we need is it in for 30 minutes… meaning if she vomits after that 30min mark it’s safely in. She then tells me that she hopes it’s not too late and that this is more of a pre-med type thing… get it in before starting. Makes me scratch my head and think then why not Monday night with this then instead of after her chemo started Tuesday morning? I mean we were here. The upside to this capsule is that the inside is not a powder but tiny little beads (pellets, balls whatever you want to call them) about the size of a pinhead… hence no immediate taste to them. Much like certain types of the candy topping sprinkles that you might see on a cupcake… or in our house just sprinkles… sometimes eaten right out of the jar.
Well… this is kind of where we came in. With all three meds in and having napped until 6:30 in the evening, she wakes up hungry. Say again? I’m hungry… can I have something to eat? Ummm… sure, how about some crackers? She also told me that she was thirsty and wanted a Coke. Okay… whatever you want. She proceeded to eat 2/3rds of a sleeve of Club crackers and drank about half of a 20 oz. bottle of Coke... further proof that miracles do happen. Being fresh off a five hour nap, she then proceeded to stay up until about 3:30 in the morning… naturally. That also takes us to today… Wednesday… and good news… the eating continues. More crackers, more Coke, some juice, Doritos, and Lucky Charms (sans milk) and a very small taste of my breakfast of hotcakes and sausage.
By the way… in case anyone is wondering, she did take it today without any fanfare even saying that she didn’t taste it, only the ice cream (which incidentally will be vanilla tomorrow… she tried chocolate today) and she will take it tomorrow, Thursday as well. She still won’t give it (the Emend) any props saying that it was the single dose of Ativan that was enabling her to eat like that.
Oy vey!
06 March, 2007
Let's Get It Done And Over With Already...
Day -7
It's now Tuesday and that means that we are indeed at CMH as in right now as I type this entry. At long last the moment that we've been waiting for but seemed like a lifetime away way back in August of '06, the last round of chemotherapy is upon us... hooray! It will be so nice to get this over with and behind us, but like I said in some of my previous posts, I think the waiting is going to be harder than anything so far. Mentally exhausting having to hold our breath as we wait out the results of every upcoming scan and test from here on out. Five to seven years is an awful long time to have to wait, but I would gladly wait for ten years if it were to mean that she'll be rid of this once and for the rest of her life.
We lucked out... we scored a solo room, that is to say we have no roommate. The room we are in is an isolation room... looks as if we will be staying here until Day -1 at which time we will move to another isolation room. When I say that we are in an isolation room, all that means for right now is that it's an isolation room, but it's not being used as such and when it's time for her to get her cells back, this room will be too dirty. The isolation restrictions aren't being enforced right now since she's not in isolation. The rooms need to be totally wiped down, top to bottom before they can declare it clean. So that is why we will be staying here until Day-1 and then moved... possibly next door. She's scheduled to get her cells back next Tuesday and that's Day 0
The chemo will be starting this morning around 9am and won't stop until some 96 hours later... sometime Saturday morning... one helluva birthday present if you ask me. She will have earned it though... she's getting two agents for the 96 hours of infusion and as an added bonus there will be a third one administered today, tomorrow and Thursday. We can add another toxin to the list... Melphalan... and a little dab'l do ya. This stuff packs a punch... small bag given over 15 minutes... it has a short life in the body but basically gets in, gets to work and gets out.
Sorry everyone... but sleep is setting in and I'm losing the battle so I'm going to end this as is and pick it up later on down the line.
Stay tuned...
KUIYTAP
It's now Tuesday and that means that we are indeed at CMH as in right now as I type this entry. At long last the moment that we've been waiting for but seemed like a lifetime away way back in August of '06, the last round of chemotherapy is upon us... hooray! It will be so nice to get this over with and behind us, but like I said in some of my previous posts, I think the waiting is going to be harder than anything so far. Mentally exhausting having to hold our breath as we wait out the results of every upcoming scan and test from here on out. Five to seven years is an awful long time to have to wait, but I would gladly wait for ten years if it were to mean that she'll be rid of this once and for the rest of her life.
We lucked out... we scored a solo room, that is to say we have no roommate. The room we are in is an isolation room... looks as if we will be staying here until Day -1 at which time we will move to another isolation room. When I say that we are in an isolation room, all that means for right now is that it's an isolation room, but it's not being used as such and when it's time for her to get her cells back, this room will be too dirty. The isolation restrictions aren't being enforced right now since she's not in isolation. The rooms need to be totally wiped down, top to bottom before they can declare it clean. So that is why we will be staying here until Day-1 and then moved... possibly next door. She's scheduled to get her cells back next Tuesday and that's Day 0
The chemo will be starting this morning around 9am and won't stop until some 96 hours later... sometime Saturday morning... one helluva birthday present if you ask me. She will have earned it though... she's getting two agents for the 96 hours of infusion and as an added bonus there will be a third one administered today, tomorrow and Thursday. We can add another toxin to the list... Melphalan... and a little dab'l do ya. This stuff packs a punch... small bag given over 15 minutes... it has a short life in the body but basically gets in, gets to work and gets out.
Sorry everyone... but sleep is setting in and I'm losing the battle so I'm going to end this as is and pick it up later on down the line.
Stay tuned...
KUIYTAP
04 March, 2007
Our Time Is Up... (most likely anyway)
It seems that tomorrow is upon us already... I know, tomorrows happen every today, but this tomorrow is one that we've been waiting for and one that we feel like we could wait some more. I know, what the heck is he drinkin'?
Tomorrow, Monday, we head on in to have a check up and see if she's ready to start, if that's the case, then we will get admitted tomorrow night and the final go round of chemotherapy will start Tuesday and go for four daze... as in 24hours a day for four days straight. We can hardly wait. I guess the upside to this is that come Saturday morning... her 11th birthday... will be the end of it. Then I think the harder thing begins... well once we are back home and done with radiation treatment (that being around sometime in April if all goes well) and that would be... the waiting.
See ya from the hospital...
Tomorrow, Monday, we head on in to have a check up and see if she's ready to start, if that's the case, then we will get admitted tomorrow night and the final go round of chemotherapy will start Tuesday and go for four daze... as in 24hours a day for four days straight. We can hardly wait. I guess the upside to this is that come Saturday morning... her 11th birthday... will be the end of it. Then I think the harder thing begins... well once we are back home and done with radiation treatment (that being around sometime in April if all goes well) and that would be... the waiting.
See ya from the hospital...
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