This week was the 2nd dose back at 100% Vincristine. All went well, until Thursday when she stopped eating and at night she started coughing a bit and freaking out a bit like she used to do, enough to have to move her out of her room. Her brother was out of school this week with strep throat and ear infection and baby sister started getting fever and goupy eyes so prolly has some sort of virus. So we kept watching Taylor but she seemed fine fever-wise. Then Friday night she was coughing so bad she couldn't sleep, nor could I. It was horrible. It was so bad she finally coughed up her NG tube and it had to come out. But her fever was only 100.0
This morning I kept watching her. She still had no high fever. She still didn't want to eat. Then, close to lunch she was getting tired, said her ear hurt, and was feeling hot; alas she was 101.8 I finished up somethings, had some lunch and checked again, same thing. So we started getting things ready and calling the Dr. And around 1:30 we were off to the ER to get checked out.
When we got there, we had a room right away, it was nice that they were not busy. This is the first time I have had to run to the ER during the day, so that is something new. Her fever was now 102.2. They say her ears just have a little fluid in them, but nothing looks bad. They did a swab for strep just in case- but it was negative, and of course they took her labs.
Her counts came back really low 460, anything under 500 means that we have to be admitted to the hospital for observation and "quarantine". There go our plans for my sons bday weekend and mother's day weekend. Oh well, such as life. At least Nana is on the way here as we speak... we will need the constant extra help over the next couple days at least for sure. Will update more as I can
Showing posts with label vincristine. Show all posts
Showing posts with label vincristine. Show all posts
Saturday, 11 May 2013
quick update
Ok I know it has been over a month since I have posted. So sorry about that. Things have been busy and I guess I didn't have the gusto to keep writing. After the last hospital admission, things have been different. She turned right around and had more of the same pain the day after leaving, this time moving to her foot instead of hip. Then it went to her knee. After a few trips to ER for pain and fever, we finally made it back to clinic where they said it is most likely just neuropathy pain and they prescribed her some meds for that. They pain continued over the next three weeks during her two week break from chemo. It came and went and moved around. She stopped getting fever though and after that one really bad week, we had a couple of good weeks. Then it was time to start chemo back up.
They started back at the 75% level of Vincristine again. She did well. The next week she went up to the 100% since her voice was still doing great. The next day her nerve pain issue stopped. So after a few days I backed of the nerve meds a bit and then just stopped them all together. Her pain has not come back. That is awesome. Her weight is up a pound, stomach pain is gone, voice is great, nerve pain gone, and no night terrors!!! Things have been great, just one trip to ER last week for fever and then home. Counts have been awesome!
They started back at the 75% level of Vincristine again. She did well. The next week she went up to the 100% since her voice was still doing great. The next day her nerve pain issue stopped. So after a few days I backed of the nerve meds a bit and then just stopped them all together. Her pain has not come back. That is awesome. Her weight is up a pound, stomach pain is gone, voice is great, nerve pain gone, and no night terrors!!! Things have been great, just one trip to ER last week for fever and then home. Counts have been awesome!
Wednesday, 27 March 2013
Chemo #9, feelin good and lots of gifts!
Well, this past week you would have never guessed Taylor was on chemo (except for the fact she is bald and has a feeding tube). She has been doing awesome! She has her voice back, she is playing a lot, she is active (almost back to her full crazy little self), she has been eating okay, and she has not complained much about her tummy hurting at all!!! It has been so nice!
Yesterday we went back to ENT (ear, nose and throat) and he didn't have to scope her. he saw her and automatically could tell how well she was doing. She was playing in his office and talking a lot. He checked her out a bit and called the Oncologist. They decided not to scope because he was going to give 50% dose again this week. They will wait to scope next week before going to 75%. He also said he will let me see him Wed morning instead of making two trips from now on! How nice of him. He isn;t in clinic that day but is in the hospital. He said he will run up to see Taylor in between his surgeries. So nice!
Today went well. Her poke didn't hurt, her weight was up a pound, and her count is 10050!!! LOL She went from almost being too low last wk to being extremely high this week. I asked him about it and he says she is prolly fighting a virus or something. I said she is fine, no signs of anything. So all is good so far. I asked the Doc if we needed to add a week onto her schedule since we missed a dose. he said we would not add one, we just skipped. So we are still on the same schedule to be done in the 10 weeks time. So this was week 9. She will get one more and then have 2 weeks off. She painted, played games, and watched tv while getting infused. I spoke with our friends again today and they are doing well too. The teenager had her older sister with her this time, so it was nice to meet her. I am glad we will stay on the same schedule with them.
Some ladies at church stayed after on Sunday and had a headband making party for Taylor and her sisters. Then one of them came over to deliver them. A ton of hairbands and 3 tutu dresses were a big surprise to the girls. They loved it. Also, today at the hospital an organization was there to give gifts to the kids at the clinic. It is called NEGU.org and they gave out Jars of Joy. This was started by a 12 yr old cancer patient while she was going through her treatment. The Nashville Predators hockey team mascot Nash was with them so all the kids got to meet him and take their pic with him. I forgot to mention last week that our friends brought Taylor a Caillou doll (we had given their little boy this a few years ago and he wanted to bless Taylor with it since she wanted to have one since Caillou was a bald 4 yr old too). He loved this doll, slept with it all the time, but he wanted her to have it. Such a sweet heart of a friend. What a blessing all these gifts are to our family during this time. Thank you everyone who has been blessing us and praying for us.
Yesterday we went back to ENT (ear, nose and throat) and he didn't have to scope her. he saw her and automatically could tell how well she was doing. She was playing in his office and talking a lot. He checked her out a bit and called the Oncologist. They decided not to scope because he was going to give 50% dose again this week. They will wait to scope next week before going to 75%. He also said he will let me see him Wed morning instead of making two trips from now on! How nice of him. He isn;t in clinic that day but is in the hospital. He said he will run up to see Taylor in between his surgeries. So nice!
Today went well. Her poke didn't hurt, her weight was up a pound, and her count is 10050!!! LOL She went from almost being too low last wk to being extremely high this week. I asked him about it and he says she is prolly fighting a virus or something. I said she is fine, no signs of anything. So all is good so far. I asked the Doc if we needed to add a week onto her schedule since we missed a dose. he said we would not add one, we just skipped. So we are still on the same schedule to be done in the 10 weeks time. So this was week 9. She will get one more and then have 2 weeks off. She painted, played games, and watched tv while getting infused. I spoke with our friends again today and they are doing well too. The teenager had her older sister with her this time, so it was nice to meet her. I am glad we will stay on the same schedule with them.
Some ladies at church stayed after on Sunday and had a headband making party for Taylor and her sisters. Then one of them came over to deliver them. A ton of hairbands and 3 tutu dresses were a big surprise to the girls. They loved it. Also, today at the hospital an organization was there to give gifts to the kids at the clinic. It is called NEGU.org and they gave out Jars of Joy. This was started by a 12 yr old cancer patient while she was going through her treatment. The Nashville Predators hockey team mascot Nash was with them so all the kids got to meet him and take their pic with him. I forgot to mention last week that our friends brought Taylor a Caillou doll (we had given their little boy this a few years ago and he wanted to bless Taylor with it since she wanted to have one since Caillou was a bald 4 yr old too). He loved this doll, slept with it all the time, but he wanted her to have it. Such a sweet heart of a friend. What a blessing all these gifts are to our family during this time. Thank you everyone who has been blessing us and praying for us.
Thursday, 21 March 2013
Chemo Week #8
Taylor had a really good week after missing the chemo. Within a few days her voice was starting to com back some and got a bit better each day. It is now almost all the way back to normal! She was also full of energy and back to her normal crazy self. She was eating almost as well as she use to as well.
She did end up having the UTI and has been on meds for that and it is better, it was from E Coli somehow. Anyway, she had started complaining of stomach pain really badly in the mornings and so we thought maybe the feedings were bothering her. So we cut back on the amount we were giving and it got better. In talking with the Dr yesterday about it though, we realize that may have bene coincidence with the UTI, maybe the pain was from it and as she got meds at the same time as we backed off food, it got better. So we are to go back to 2 cans of pediasure over a 12 hour night period.
Mon Taylor and her big sister were playing and her feeding tube got ripped out of her nose. So she had to go without feedings for 2 nights. We got it put back in yesterday, that is so not fun. Poor Taylor. Hopefully it stays in this time and nothing makes it come out.
Tues we were back at ENT to get her vocal chords checked out. They looked back to normal and the Dr could definitely hear her talking this time. So we were clear for going back to the Vincristine drug on Wed.
Her redo of Chemo dose 7 went well. They did a 50% dose of the Vincristine to watch for the next week to see if it will mess with her voice again or not. If it goes well, then next week it will go up to 75%, then 100%. If it does mess with her voice, then we will stop Vincristine and try a different regimin. She is down in weight just a bit and her counts are low this time, at 580. I thought that was strange. So anyway, we have to make sure she doesn't get around sick people for now. She feels fine though and is having fun playing. Even today, after having chemo she is playing and eating and being herself! It is awesome! However, last night she started the fussing again a little bit. She woke me up crying at one point and when i went in there, she said she threw up. I looked around but it was only a little spit up. We went potty and cleaned up her hand and she went back to sleep. I did leave the bucket next to her bed just in case though.... which I am soooo glad I did because a little while later I heard her get up and throw up. She threw up a lot, all in the bucket. So I stopped the feeding. i don't know if she is nautious from the chemo or if the feedings are bugging her that bad. So we will just have to wait and see. I am glad to see she is fine today! She has been eating well and playing all day!
She did end up having the UTI and has been on meds for that and it is better, it was from E Coli somehow. Anyway, she had started complaining of stomach pain really badly in the mornings and so we thought maybe the feedings were bothering her. So we cut back on the amount we were giving and it got better. In talking with the Dr yesterday about it though, we realize that may have bene coincidence with the UTI, maybe the pain was from it and as she got meds at the same time as we backed off food, it got better. So we are to go back to 2 cans of pediasure over a 12 hour night period.
Mon Taylor and her big sister were playing and her feeding tube got ripped out of her nose. So she had to go without feedings for 2 nights. We got it put back in yesterday, that is so not fun. Poor Taylor. Hopefully it stays in this time and nothing makes it come out.
Tues we were back at ENT to get her vocal chords checked out. They looked back to normal and the Dr could definitely hear her talking this time. So we were clear for going back to the Vincristine drug on Wed.
Her redo of Chemo dose 7 went well. They did a 50% dose of the Vincristine to watch for the next week to see if it will mess with her voice again or not. If it goes well, then next week it will go up to 75%, then 100%. If it does mess with her voice, then we will stop Vincristine and try a different regimin. She is down in weight just a bit and her counts are low this time, at 580. I thought that was strange. So anyway, we have to make sure she doesn't get around sick people for now. She feels fine though and is having fun playing. Even today, after having chemo she is playing and eating and being herself! It is awesome! However, last night she started the fussing again a little bit. She woke me up crying at one point and when i went in there, she said she threw up. I looked around but it was only a little spit up. We went potty and cleaned up her hand and she went back to sleep. I did leave the bucket next to her bed just in case though.... which I am soooo glad I did because a little while later I heard her get up and throw up. She threw up a lot, all in the bucket. So I stopped the feeding. i don't know if she is nautious from the chemo or if the feedings are bugging her that bad. So we will just have to wait and see. I am glad to see she is fine today! She has been eating well and playing all day!
Wednesday, 13 March 2013
Chemo Day 7 & Voice Issues
The last couple nights Taylor has been complaining about her tummy a lot but sleeping okay for the most part. It seems that the tube feedings may be bothering her or something. I cut the feed off in the early morning today because she was complaining a lot. At one point last night she apparently stood next to her bed and peed on the floor??? That is a new one. She has been eating ok over the past couple days; not good, but at least she is eating here and there. She still gets tired a lot and doesn't want to do anything we ask her. She won't clean up her toys, put her clothes away, etc. And the other day some friends came over and they watched tv. When it was time to stop tv and go play, she protested, hid under her blanket and fell asleep. She wants to watch tv all day long and, um, I don't care how sick someone is, that is not a good idea. So we have been having to deal with her disobedience and protesting in things. It is not easy to discipline a "sick" kid.
Today was Chemo visit #7 and review of 2nd MRI results. We were in clinic pretty fast and she got accessed and blood drawn, then stats taken, and then straight to a room. I had mentioned to the nurse about Taylor having pain during urination and bowel movements and she thinks it may be UTI, so we needed to get a urine sample.
Once in the room, minutes later the Doc came in, that was fast! He says the tumor looks stable. They didn't have the full optic scan this time for some reason so he could not see all the angles, but the before and current pics look about the same. There may be some slight shrinkage in one tiny area but it is hard to tell. In this kind of tumor, the success is not based off of tumor shrinkage or disappearance, it is based off of no growth or no extra loss of her sight. So, things are looking good so far with the tumor.
While discussing that, I brought up the issue of her voice. Since Doc was on vacation last week, I did not get to talk with him about it. When I mentioned what was going on, he immediately knew what it most likely was and had some concern. He said the Vincristine (one of the 2 chemo drugs she is on) can cause vocal chord paralysis and that we needed to get it checked. So, he called the Ear Nose and Throat Doc upstairs and got us in right away to get that checked out. So, off we were to see him.
We got in right away, and the Doc was really nice and had already reviewed Taylor's file and everything. He knew exactly what the oncologist was talking about. We talked and then he did a little check on Taylor. Then he gave her some spray in her nose to numb it so that they could do a scope of her vocal chords. It only took a few minutes to do the procedure while I held her in my lap. Then a few more min for him to review the video. He said that the vocal chords have movement so they are not fully paralyzed, but they are not fully working as they will not close all the way. This can be causing her voice inhibition and can cause her coughing when she drinks. It is not good for your vocal chords to do that because it can cause liquid to go down the wrong tube.
So, we went back to chemo clinic while the Docs talked on the phone. Soon after, the Doc comes out and says that we will hold off on doing chemo today so that they can watch and see if the voice gets better off the Vincristine. It is supposed to come right back if that is in case the problem. Then, Tues we will go back to the throat guy to see if things look better. If so, then chemo will be on for Wed but at a lower dose and then the throat Doc will check her monthly to keep an eye on it. (great just what Taylor needs, another specialist and our family another set of appts to go to). If the voice doesn't get better by Tues, then oncology Doc says we will have to change meds and get a new regimin set up. So, we are in a wait and see mode right now I guess.
We did get her numbers and they were really good, 1750 I think! Her red blood cells are still a bit low, but not enough to need to do anything about it.
On the way out, we ran into the teenage girl and her mom. It was good to chat with them for a min. She is doing really well, no major problems. She is on lots of different meds for various things, like Taylor is, but I think more so. She said she feels like a walking pharmacy. We know how she feels! She also still has her hair. Her MRI was last night so hopefully they got good news today at their appt.
Taylor has been low key today, not very active. Her tummy is still hurting and she hasn't really eaten much. I just heard back on the urine test and it seems she prolly has a UTI. So they are sending a scrip for that as we wait on the full culture to come back in a couple days. Hopefully with her not having chemo this week that we will have a good week!
Today was Chemo visit #7 and review of 2nd MRI results. We were in clinic pretty fast and she got accessed and blood drawn, then stats taken, and then straight to a room. I had mentioned to the nurse about Taylor having pain during urination and bowel movements and she thinks it may be UTI, so we needed to get a urine sample.
Once in the room, minutes later the Doc came in, that was fast! He says the tumor looks stable. They didn't have the full optic scan this time for some reason so he could not see all the angles, but the before and current pics look about the same. There may be some slight shrinkage in one tiny area but it is hard to tell. In this kind of tumor, the success is not based off of tumor shrinkage or disappearance, it is based off of no growth or no extra loss of her sight. So, things are looking good so far with the tumor.
While discussing that, I brought up the issue of her voice. Since Doc was on vacation last week, I did not get to talk with him about it. When I mentioned what was going on, he immediately knew what it most likely was and had some concern. He said the Vincristine (one of the 2 chemo drugs she is on) can cause vocal chord paralysis and that we needed to get it checked. So, he called the Ear Nose and Throat Doc upstairs and got us in right away to get that checked out. So, off we were to see him.
We got in right away, and the Doc was really nice and had already reviewed Taylor's file and everything. He knew exactly what the oncologist was talking about. We talked and then he did a little check on Taylor. Then he gave her some spray in her nose to numb it so that they could do a scope of her vocal chords. It only took a few minutes to do the procedure while I held her in my lap. Then a few more min for him to review the video. He said that the vocal chords have movement so they are not fully paralyzed, but they are not fully working as they will not close all the way. This can be causing her voice inhibition and can cause her coughing when she drinks. It is not good for your vocal chords to do that because it can cause liquid to go down the wrong tube.
So, we went back to chemo clinic while the Docs talked on the phone. Soon after, the Doc comes out and says that we will hold off on doing chemo today so that they can watch and see if the voice gets better off the Vincristine. It is supposed to come right back if that is in case the problem. Then, Tues we will go back to the throat guy to see if things look better. If so, then chemo will be on for Wed but at a lower dose and then the throat Doc will check her monthly to keep an eye on it. (great just what Taylor needs, another specialist and our family another set of appts to go to). If the voice doesn't get better by Tues, then oncology Doc says we will have to change meds and get a new regimin set up. So, we are in a wait and see mode right now I guess.
We did get her numbers and they were really good, 1750 I think! Her red blood cells are still a bit low, but not enough to need to do anything about it.
On the way out, we ran into the teenage girl and her mom. It was good to chat with them for a min. She is doing really well, no major problems. She is on lots of different meds for various things, like Taylor is, but I think more so. She said she feels like a walking pharmacy. We know how she feels! She also still has her hair. Her MRI was last night so hopefully they got good news today at their appt.
Taylor has been low key today, not very active. Her tummy is still hurting and she hasn't really eaten much. I just heard back on the urine test and it seems she prolly has a UTI. So they are sending a scrip for that as we wait on the full culture to come back in a couple days. Hopefully with her not having chemo this week that we will have a good week!
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