We were told that this cycle of chemo would probably be the hardest since it is more concentrated and she gets it twice. Well if this is hard, sign me up for a round.
Averi is doing awesome (knock on wood...no seriously, we can use all the help we can get). I have to admit that it makes me a little nervous because I remember saying something similar right before she started throwing up for 2 days and then taking a trip to the PICU. She hasn't even acted sick at all and only complains because she's bored out of her mind (I know the feeling).
She did start showing signs of the chemo today when her blood work showed that her hemoglobin and platelets had dropped. This is expected and means the chemo is doing it's job, but she needed both platelet and red blood cell transfusions. Luckily she hasn't started showing negative reactions to getting blood products yet.
I have a confession to make. Someone we know had to have follow up tests done after getting bad results on a mammogram. When she emailed everyone to let us know that it wasn't cancer, I didn't have the expected sigh of relief. I wasn't happy for her, not that I was mad either...I was jealous.
Why is it that my baby has to suffer through cancer when someone who's older gets a free ride? Why is it acceptable for me to think like that? It's not like her having cancer would take it away from my daughter. It's not like our lives would somehow be normal again if someone else's got torn apart. So why can't I be happy for her and congratulate her like all the other people who's kids aren't living on the oncology floor at the hospital?
I hate that I reacted that way and I hate that I feel justified in doing it.
Wednesday, December 8, 2010
The Faster Way
Averi came back to the hospital today to finish getting the chemo for cycle 2 and then stay for several weeks until her blood counts come back up. Our time at home always seems so short. Just when we've settled into a somewhat 'normal' life, (if normal consists of your 19 month old sleeping in your room and waking you up at odd hours of the night) it's time to pack up yet again.
I was thinking the other day how lucky we are that Kaili still gets to come see Averi at the hospital. Last year, because of the swine flu, kids under 12 couldn't visit people at the hospital from the beginning of October until April. We have already been allowed to enjoy 2 months more than that. I know flu season will start soon but I am so thankful for the time we've had to spend as a family, even if it isn't 'normal.'
Luckily Averi has been feeling much better since getting the zofran and even started eating well on Sunday...just in time for the trip back for more chemo. Since we didn't start this admission with a trip to the OR or the PICU, we started at the Day Hospital. I was told that the point of the Day Hospital was to get the chemo started faster, without having to do all the admission paperwork, and then being transferred to a room later on.
When chemo was finally started 3 1/2 hours after our arrival, Averi and I were a little concerned about how long the slower way of just being admitted to the floor would take...
We did finally get moved to a room on the floor, that didn't consist of a curtain wall (which is great for napping babies by the way), and spent the rest of the day hanging out as usual.
I was thinking the other day how lucky we are that Kaili still gets to come see Averi at the hospital. Last year, because of the swine flu, kids under 12 couldn't visit people at the hospital from the beginning of October until April. We have already been allowed to enjoy 2 months more than that. I know flu season will start soon but I am so thankful for the time we've had to spend as a family, even if it isn't 'normal.'
When chemo was finally started 3 1/2 hours after our arrival, Averi and I were a little concerned about how long the slower way of just being admitted to the floor would take...
Saturday, December 4, 2010
Clapping
I realized today that some of Averi's recent accomplishments have been overlooked as life has taken it's toll. I am proud to say that sometime in the last month Averi has learned to CLAP! It is super cute and very nonrhythmic, but clapping none the less. She gets better at it everyday and will do it any time you say, "YEAH!"
She has also become very proficient at blowing kisses. This happened in October when she was in the hospital for her first round of chemo. She makes kisses and puts her hand over them but never really blows them away. I love it!
She has also become very proficient at blowing kisses. This happened in October when she was in the hospital for her first round of chemo. She makes kisses and puts her hand over them but never really blows them away. I love it!
Friday, December 3, 2010
Come on Zofran
On the way home from the hospital yesterday, I stopped to pick up Averi's Zofran (nausea medicine) only to find out that it was out of stock and had to be ordered. As I drove away, all I could think was that she better not feel crappy between now and "this time tomorrow" (as the pharmacist said) or I was going to be really mad.
Mad doesn't even begin to describe my feelings at 3:30 this morning as I held a towel under Averi's chin for over an hour as her body repeatedly heaved. I got to a point where I just stopped trying to go back to sleep because my feet kept getting tangled in the sheets as I panicked to grab the towel, turn on the light, and get Averi sitting up so that she wouldn't aspirate on her throw up.
We all must have eventually fallen back to sleep because the next thing I knew it was time to feed her breakfast...right, like that's going to end well. I left her in her booster with her bib on until she was done eating and her tube feed was finished, just in case it didn't stay down. Then she pooped. I laid her down and turned around to go get a diaper just in time to hear her lose her breakfast on the carpet.
Needless to say, Averi spent the rest of the day wearing a bib so that she wouldn't get her broviac dressing dirty/infected and I spent the rest of the day jumping at every sound she made (do you have any idea how often she blows raspberries?) and keeping a rag on my shoulder just in case.
By the time Dan got home with the zofran tonight, she was happy as could be and in no need of it. Little does she know, we will be giving her some when she goes to bed tonight.
Mad doesn't even begin to describe my feelings at 3:30 this morning as I held a towel under Averi's chin for over an hour as her body repeatedly heaved. I got to a point where I just stopped trying to go back to sleep because my feet kept getting tangled in the sheets as I panicked to grab the towel, turn on the light, and get Averi sitting up so that she wouldn't aspirate on her throw up.
We all must have eventually fallen back to sleep because the next thing I knew it was time to feed her breakfast...right, like that's going to end well. I left her in her booster with her bib on until she was done eating and her tube feed was finished, just in case it didn't stay down. Then she pooped. I laid her down and turned around to go get a diaper just in time to hear her lose her breakfast on the carpet.
Needless to say, Averi spent the rest of the day wearing a bib so that she wouldn't get her broviac dressing dirty/infected and I spent the rest of the day jumping at every sound she made (do you have any idea how often she blows raspberries?) and keeping a rag on my shoulder just in case.
By the time Dan got home with the zofran tonight, she was happy as could be and in no need of it. Little does she know, we will be giving her some when she goes to bed tonight.
Thursday, December 2, 2010
Home Sweet Home - Part 3
As part of the chemo regimen for cycle 2, Averi has to get a big nasty shot in her leg after the first 2 days. Since she got her last dose of chemo during the night, the nurse woke me up this morning to let me know that they were icing her leg in preparation for the shot. She said it feels a lot like a flu shot, in that it hurts to get and stays sore for a while, and she had been stressing about giving it all night.
So, with an iced leg and two nurses holding down her sleeping body, Averi got her shot. Did she scream? No. Did she cry? No. Did she fuss and then roll over on her side, put her thumb in her mouth, and go back to sleep? YES! It was a miracle.
After that we were ready to go, except for that nagging feeling that something was wrong with her throat. I'm hoping it's just sore from being intubated, but she keeps waking herself up and crying when she coughs and gagging on everything she eats. I had to fish a tinny piece of fruit out of her mouth yesterday after she gagged on it several times and almost threw up.
When I asked the doctor to look at her throat before she went home, just so I wouldn't have to worry about it at home, he told the nurse that he might want to keep her another night. That's what I get for being cautious. Luckily, her fellow came in, looked down her throat, and said that it was red but not infected and we could still go home.
So, by the end of today we found ourselves all at home together as a family...until Tuesday anyways. The girls and I snuggled up to read books and Averi did some texting.
It was wonderful. Thank goodness for happy moments!
So, with an iced leg and two nurses holding down her sleeping body, Averi got her shot. Did she scream? No. Did she cry? No. Did she fuss and then roll over on her side, put her thumb in her mouth, and go back to sleep? YES! It was a miracle.
After that we were ready to go, except for that nagging feeling that something was wrong with her throat. I'm hoping it's just sore from being intubated, but she keeps waking herself up and crying when she coughs and gagging on everything she eats. I had to fish a tinny piece of fruit out of her mouth yesterday after she gagged on it several times and almost threw up.
When I asked the doctor to look at her throat before she went home, just so I wouldn't have to worry about it at home, he told the nurse that he might want to keep her another night. That's what I get for being cautious. Luckily, her fellow came in, looked down her throat, and said that it was red but not infected and we could still go home.
So, by the end of today we found ourselves all at home together as a family...until Tuesday anyways. The girls and I snuggled up to read books and Averi did some texting.
Wednesday, December 1, 2010
Feeling Yuck
Let me begin by saying that I forgot to take any pictures today, so I risked waking my sweet baby to take this picture for you:
Today was a long day. Apparently there is no one week waiting period like last time before Averi starts feeling yuck. She wasn't horrible, but you could definitely tell she didn't feel well because she kept whimpering and didn't even want to cuddle. She even feels warm to me but doesn't have a temperature.
When I told the doctor about it he said, "Yeah, the meds we are giving her are very concentrated and can cause flu-like symptoms." Oh, so now you have decided to tell me this bit of unimportant information? He did say that it would go away about 24 hours after the meds are complete. Come on Friday!
I'm a little bit concerned about Averi's throat. She is spoon feeding just fine but when I tried to feed her with the honey bear it was a battle. She cried and turned away and wouldn't take any consecutive swallows. She also gagged really bad on a small piece of fruit I gave her. I think her throat is either really sore from being intubated so much recently or maybe some damage was done.
In good news, the discharge nurse came in today and said that we might get to go home tomorrow and stay there for a few days until it's time for next week's session (after which we will be staying here until her counts come back up again). We will have to wait and see how she is feeling. Hopefully things will work out and we can be together for the weekend.
When I told the doctor about it he said, "Yeah, the meds we are giving her are very concentrated and can cause flu-like symptoms." Oh, so now you have decided to tell me this bit of unimportant information? He did say that it would go away about 24 hours after the meds are complete. Come on Friday!
I'm a little bit concerned about Averi's throat. She is spoon feeding just fine but when I tried to feed her with the honey bear it was a battle. She cried and turned away and wouldn't take any consecutive swallows. She also gagged really bad on a small piece of fruit I gave her. I think her throat is either really sore from being intubated so much recently or maybe some damage was done.
In good news, the discharge nurse came in today and said that we might get to go home tomorrow and stay there for a few days until it's time for next week's session (after which we will be staying here until her counts come back up again). We will have to wait and see how she is feeling. Hopefully things will work out and we can be together for the weekend.
Cycle 2 Begins...Finally
I'm assuming the bone marrow results were good because they started Averi's cycle 2 chemo this afternoon. This cycle is a bit different, consisting of four 3 hour sessions every 12 hours (did you follow that?).
Averi did really well with the chemo today, but we will wait and see how she is doing tomorrow after there is more of it in her system. Apparently this is a really concentrated version of Cyterabine, one of the drugs she gets during the other cycles, so this is going to be "the hard cycle." Yipee!
Her least favorite part of this cycle is having to get eye drops every 6 hours to prevent her eyes from burning or being damaged. Her beautiful almond eyes are small to begin with but when she squeezes them shut there is no getting in. Oddly enough, I had more than one nurse tell me that giving eye drops is their least favorite thing to do (Really? because I thought stabbing someone with a large needle would suck).
Today was also somewhat entertaining because the nurses had to do tons of blood draws. As part of the study that Averi is taking part in, they needed blood work 8 times, at different stages during the therapy. Thank goodness for central lines and not having to be poked that many times (as long as it doesn't get infected!).
Other than that, Averi is doing awesome and eating like a pro because the steroid she's on for her breathing makes her hungry. I think I've said this before, but it would be wonderful if she could permanently be put on steroids. Oh well, I'll take never coming back to the hospital if that's the alternative. :)
(Dan brought the camera tonight so I promise lots of pictures for tomorrow.)
Averi did really well with the chemo today, but we will wait and see how she is doing tomorrow after there is more of it in her system. Apparently this is a really concentrated version of Cyterabine, one of the drugs she gets during the other cycles, so this is going to be "the hard cycle." Yipee!
Her least favorite part of this cycle is having to get eye drops every 6 hours to prevent her eyes from burning or being damaged. Her beautiful almond eyes are small to begin with but when she squeezes them shut there is no getting in. Oddly enough, I had more than one nurse tell me that giving eye drops is their least favorite thing to do (Really? because I thought stabbing someone with a large needle would suck).
Today was also somewhat entertaining because the nurses had to do tons of blood draws. As part of the study that Averi is taking part in, they needed blood work 8 times, at different stages during the therapy. Thank goodness for central lines and not having to be poked that many times (as long as it doesn't get infected!).
Other than that, Averi is doing awesome and eating like a pro because the steroid she's on for her breathing makes her hungry. I think I've said this before, but it would be wonderful if she could permanently be put on steroids. Oh well, I'll take never coming back to the hospital if that's the alternative. :)
(Dan brought the camera tonight so I promise lots of pictures for tomorrow.)
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