I guess I have really slacked, huh? No news for a while. Things have been going somewhat smoothly for Clara and I have been sick, so I just haven't felt like doing an update. Here's a recap.
Chemo #7 went well. Her ANC was 3100 and we celebrated! Praising God because he is faithful. Clara has been going to school quite a bit and doing very well there. Her teacher has told me several times how proud of her she is. She is handling her emotions well while she is at school and doing well on her work.
Then there is this cough. Clara Jean has had a cough for weeks. She had it when she was in the hospital and she still has it. The oncologist has examined her and listened to her chest several times. Nothing. Toward the end of last week and over the weekend the cough seemed to be getting worse to me. Monday morning she said that her throat hurt, her head hurt and her chest hurt. So I am thinking flu, strep, something like that. I called the oncologist's office and they told me to take her to her regular doctor. So I called his office and set up an appointment for 1 o'clock.
After examining her he asked me some questions about her counts and how she had been doing with her chemo. Then he told me that he didn't really see a reason for her cough. He said that his concern was fungus in her lungs. He told me that because her ANC was below 500 for several days that she was very vulnerable to this type of thing and that he wanted to do a chest x-ray.
The chest x-ray was clear so we are going to see a pulmonologist. The problem with that is that the pulmonologist is booked until the end of December!! So we have an appointment scheduled and we are on the cancellation list. I am praying for there to be a cancellation soon. I also have a call in to the doctor to see if we should take another course of action, like taking her to the ER.
Please pray for us and this situation. We are concerned and are not sure what we should do. Clara is coughing non-stop and is miserable because of it.
Tuesday, September 29, 2009
Saturday, September 12, 2009
Thursday's counts
I am going to start this post off with some EXCELLENT news! Clara's MRI was clean! No sign of any disease in her skull or around it! God is good.
Thursday morning I took Clara Jean back to have her counts checked again. Luckily we got a nurse that we have had before and that I really like and trust. She had no trouble with her port and we didn't have to wait too long for the result. Her ANC was up to 850! So I asked the nurse, "she can go to school, right? Since it is over 750." This lead to a discussion about her immune system. Here's the thing, and I think I have shared some of this already, the chemo drug that Clara gets is called Vinblastine. (And she is also on Prednisone.) Vinblastine doesn't usually cause the trouble that it has for Clara. Usually kids "breeze" through Vinblastine treatments. Remember way back when I told you that Dr. Whitlock said that CJ would probably be able to go to school after her treatments and she'd feel pretty good. Remember a the first time her counts were low and I told you that the nurse had told me the week before that she doesn't worry about counts being low with Vinblastine. Well, it hasn't been that way for us. Clara has struggled a tremendous amount.
After talking to the nurse, we decided to wait until CJ's ANC was over 1000 to send her to school. Because it was a surprise that her ANC got all the way down to 220. Because it has taken almost two weeks for it to go from 220 to 850. Because the flu, strep and everything else is going around so much. Because she still has a cough and isn't feeling all that great. We just decided that we'd rather not send her back before she is good and strong.
Monday is chemo #7. They will check her counts again on Monday and I am hopeful. She misses school so much!
Thursday morning I took Clara Jean back to have her counts checked again. Luckily we got a nurse that we have had before and that I really like and trust. She had no trouble with her port and we didn't have to wait too long for the result. Her ANC was up to 850! So I asked the nurse, "she can go to school, right? Since it is over 750." This lead to a discussion about her immune system. Here's the thing, and I think I have shared some of this already, the chemo drug that Clara gets is called Vinblastine. (And she is also on Prednisone.) Vinblastine doesn't usually cause the trouble that it has for Clara. Usually kids "breeze" through Vinblastine treatments. Remember way back when I told you that Dr. Whitlock said that CJ would probably be able to go to school after her treatments and she'd feel pretty good. Remember a the first time her counts were low and I told you that the nurse had told me the week before that she doesn't worry about counts being low with Vinblastine. Well, it hasn't been that way for us. Clara has struggled a tremendous amount.
After talking to the nurse, we decided to wait until CJ's ANC was over 1000 to send her to school. Because it was a surprise that her ANC got all the way down to 220. Because it has taken almost two weeks for it to go from 220 to 850. Because the flu, strep and everything else is going around so much. Because she still has a cough and isn't feeling all that great. We just decided that we'd rather not send her back before she is good and strong.
Monday is chemo #7. They will check her counts again on Monday and I am hopeful. She misses school so much!
Wednesday, September 9, 2009
Still no school
Tuesday was Della Jane's first day of pre-K! They grow up fast, don't they. Some parents were walking their kids in so I asked DJ if she wanted me to walk her in, "no thanks" she says. So we drive up to the line and she is so excited she is bouncing around in the backseat. Mrs. Jeanna is our sweet preschool director, she opened the door for DJ and we started talking about Clara. DJ wasn't having any if that. She squeezed around Jeanna and ran in. Then she came back, stuck her head around Jeanna, waves and yells, "bye mom, love you." And she was off again.
Clara Jean and I went up to Vandy to have her counts checked again. I made a point to ask Dr. Whitlock last week, what her ANC had to be for her to go back to school. See, I knew that we would be dealing with different people, nurses and doctors, that all have their own opinion of when it is OK to go back to school. I wanted to know what Dr. W wanted and I planned on following it. And it was a good thing that I asked.
CJ and I got to the hospital a little early. (I know, I am never early.) Anyway, we have been early before and it worked nicely because they took us back and moved us right along. This wasn't the case on Tuesday. I guess since they were closed Monday they had all of Monday's and Tuesday's patients there. It was a lot of people. Did I tell you the story a while back about the lady, a patient's mother, who was going on and on about Miley Cyrus? Miley isn't really 16, she's much older, it is all a publicity stunt. Miley wouldn't be famous if it weren't for her dad...blah, blah, blah. So this same lady is in the lobby, on the phone, yelling. Not yelling at the person on the other end. No, more to the person on the other end. Something about the idiotic nurse and on and on. Well, I think we got her nurse. Not the idiotic part. But she wasn't in the best of moods and I am thinking maybe it was because she just got chewed out.
The nurse accessed CJ's port and did have some trouble getting the blood to flow. It took her a little while to get it moving but once she did it was fine. It was so crowded that we had to go back out to the waiting room and sit. After almost an hour the nurse came out and told me that her ANC was 640. She said, "I know Jim, I mean Dr. Whitlock, says that she needs to be at 750 but she really can go to school if it is over 500." Umm...thanks. But I think I will stick with what my doctor told me. I mean really. It has taken her 9 days to go from 220 to 640. The doc last week said that she was bouncing back slowly. So why would I send her to school before she is strong enough? Why would I put her in a situation that will likely land her right back in the hospital? So I told the nurse that I wasn't going to send her to school until her ANC was 750 and she was a little irritated. So then she says,"well, then you should just wait a day or two and then send her back. It will be up by then." Again...no. I told her that I was going to bring her back on Thursday to have her counts checked again. I'm sorry, but I am not going to take any chances with my little girl.
We'll head back on Thursday. I am praying that her counts are incredibly high. Surprisingly high. I so want her to feel good.
Clara Jean and I went up to Vandy to have her counts checked again. I made a point to ask Dr. Whitlock last week, what her ANC had to be for her to go back to school. See, I knew that we would be dealing with different people, nurses and doctors, that all have their own opinion of when it is OK to go back to school. I wanted to know what Dr. W wanted and I planned on following it. And it was a good thing that I asked.
CJ and I got to the hospital a little early. (I know, I am never early.) Anyway, we have been early before and it worked nicely because they took us back and moved us right along. This wasn't the case on Tuesday. I guess since they were closed Monday they had all of Monday's and Tuesday's patients there. It was a lot of people. Did I tell you the story a while back about the lady, a patient's mother, who was going on and on about Miley Cyrus? Miley isn't really 16, she's much older, it is all a publicity stunt. Miley wouldn't be famous if it weren't for her dad...blah, blah, blah. So this same lady is in the lobby, on the phone, yelling. Not yelling at the person on the other end. No, more to the person on the other end. Something about the idiotic nurse and on and on. Well, I think we got her nurse. Not the idiotic part. But she wasn't in the best of moods and I am thinking maybe it was because she just got chewed out.
The nurse accessed CJ's port and did have some trouble getting the blood to flow. It took her a little while to get it moving but once she did it was fine. It was so crowded that we had to go back out to the waiting room and sit. After almost an hour the nurse came out and told me that her ANC was 640. She said, "I know Jim, I mean Dr. Whitlock, says that she needs to be at 750 but she really can go to school if it is over 500." Umm...thanks. But I think I will stick with what my doctor told me. I mean really. It has taken her 9 days to go from 220 to 640. The doc last week said that she was bouncing back slowly. So why would I send her to school before she is strong enough? Why would I put her in a situation that will likely land her right back in the hospital? So I told the nurse that I wasn't going to send her to school until her ANC was 750 and she was a little irritated. So then she says,"well, then you should just wait a day or two and then send her back. It will be up by then." Again...no. I told her that I was going to bring her back on Thursday to have her counts checked again. I'm sorry, but I am not going to take any chances with my little girl.
We'll head back on Thursday. I am praying that her counts are incredibly high. Surprisingly high. I so want her to feel good.
Sunday, September 6, 2009
MRI
Yesterday we went back to Vandy for an MRI that has been scheduled for a couple of weeks. It is routine to check her the spot where the tumor was after the first six weeks of chemo. I was, again, a nervous wreck about the germs in the hospital. But CJ is a pro.
When we get back to the room to have the MRI the tech tells me that they don't have the nursing staff to access her port so she will have to have a regular IV. I tell her that they had told us that we could go upstairs to have her port accessed but that I don't know if anyone is there on Saturday. So she calls someone on the 6th floor and they tell us to come on up. Long story short, after 45 minutes and trying twice, the nurse cannot it. She thinks that she is in but no blood is coming out. What happens is after the needle/tube are in they flush it with saline and a medication to keep it from clogging. When they are flushing it they push some in and then pull back on the syringe, to pull some blood in, so they are sure that they have done it right. Well, the saline was flushing fine, but no blood. The nurse thinks that maybe her line is clogged, maybe there is some clotted blood. She thinks she it's done right because Clara isn't saying it hurts when she flushes and because Clara says that she can taste it. She always complains about the way it tastes. I ask the nurse what they will do if her line is clogged and she says that there is stronger medicine that they can push through to unclog it. So she ends up with a regular IV anyway!
The MRI went well. She wiggled a little, but overall was still and they got all the images they needed.
When we get back to the room to have the MRI the tech tells me that they don't have the nursing staff to access her port so she will have to have a regular IV. I tell her that they had told us that we could go upstairs to have her port accessed but that I don't know if anyone is there on Saturday. So she calls someone on the 6th floor and they tell us to come on up. Long story short, after 45 minutes and trying twice, the nurse cannot it. She thinks that she is in but no blood is coming out. What happens is after the needle/tube are in they flush it with saline and a medication to keep it from clogging. When they are flushing it they push some in and then pull back on the syringe, to pull some blood in, so they are sure that they have done it right. Well, the saline was flushing fine, but no blood. The nurse thinks that maybe her line is clogged, maybe there is some clotted blood. She thinks she it's done right because Clara isn't saying it hurts when she flushes and because Clara says that she can taste it. She always complains about the way it tastes. I ask the nurse what they will do if her line is clogged and she says that there is stronger medicine that they can push through to unclog it. So she ends up with a regular IV anyway!
The MRI went well. She wiggled a little, but overall was still and they got all the images they needed.
Friday's counts
Friday morning CJ and I head up to Vandy. I am a nervous wreck about her touching anything in the hospital! I think that I told her a million times not to touch anything! She did a very nice job of keeping her hands folded, even when she sat down, she kept her hands in her lap.
The doctor examined Clara and said that she looked good. No fever, nothing hurting. She does have a slight cold, but nothing big. I was also happy to see that her weight is going back down. I forget how high it got but she is only up about 12 pounds now. I know that she was up at least 15, so I hope this means we are headed back to normalcy.
They take blood and the numbers that come back are not what I had hoped for. Her ANC is 380. If you remember it was 220 on Sunday and 300 on Wednesday. So it is going up but a lot slower than anyone wants them to. Including the doctor who reminds me to keep her out of public places and to watch for fever. She tells me that they'll see us back on Tuesday.
The doctor examined Clara and said that she looked good. No fever, nothing hurting. She does have a slight cold, but nothing big. I was also happy to see that her weight is going back down. I forget how high it got but she is only up about 12 pounds now. I know that she was up at least 15, so I hope this means we are headed back to normalcy.
They take blood and the numbers that come back are not what I had hoped for. Her ANC is 380. If you remember it was 220 on Sunday and 300 on Wednesday. So it is going up but a lot slower than anyone wants them to. Including the doctor who reminds me to keep her out of public places and to watch for fever. She tells me that they'll see us back on Tuesday.
Friday, September 4, 2009
Day Three
I am a little behind...sorry. Monday night and Tuesday night Tom spent the night at the hospital with Clara and I came home and stayed with the girls. Then in the mornings after Lillie and Emma had gone to school and I had dropped Della off with a friend, I would head up to the hospital.
We were frustrated because we kept getting different information. We thought the ANC (absolute neutrophil count) had to be 500 to go home. Then we thought that there had to be two tests, both showing an increase in numbers. Then we heard that she had to be fever free for 48 and have two tests with increasing numbers. Clara had been fever free since the middle of the night on Sunday, so we were happy about that. But her ANC was only 220 on Sunday night and they hadn't checked it again, so when Wednesday morning rolled around, I had no idea what to expect.
Wednesday at about 11 the nurse came in and told me that her ANC was only 300. She didn't come out and say it, but I don't think she thought they would let us go home. Then an hour or so later the doctors come in and say, "so, do you want to go home today?" I was surprised but they said that we could. Then it got a little weird. I asked when we needed to come back and have her checked again and they said that we didn't. Ummm...OK???? So they tell me they'll get the paperwork ordered and they leave.
Clara Jean wanted to go down to the playroom so on our way down the hall I asked if our nurse could come down there and talk to us. We were playing Connect Four, Clara was beating me for the third time, when she came in. I asked the nurse when Clara Jean could go back to school, she said when her ANC was 750. We talked for a minute about neutropenia and how many kids it effects. Then I asked her how long it would take before we could leave. She said, "well, that still depends on her numbers." Then I realize that she doesn't know we've been released. I told her and she was surprised, "really???" she says. I told her that the doctor told me that we can leave and that she isn't planning on checking her again and that I am concerned about knowing when she can go back to school, if they aren't going to check her counts again. She tells me she'll be back in a few and leaves.
When she comes back in she tells me that she has talked to the case manager, a lady over in oncology. They have scheduled appointments for Friday and Tuesday to have her counts checked. If her counts are good enough on Friday, they'll cancel the Tuesday appointment and Clara can go to school.
Later, after we are home, I am worrying. I don't understand all the conflicting stories and I am feeling unsure about her being home. So after talking to a friend or two about it I decide to call Dr. Whitlock and talk to him. He calls me back pretty quickly and does a nice job of explaining the decision to let CJ come home and the risks that we are still facing. No school, no public places, lots of hand washing and Lysol wipes.
We were frustrated because we kept getting different information. We thought the ANC (absolute neutrophil count) had to be 500 to go home. Then we thought that there had to be two tests, both showing an increase in numbers. Then we heard that she had to be fever free for 48 and have two tests with increasing numbers. Clara had been fever free since the middle of the night on Sunday, so we were happy about that. But her ANC was only 220 on Sunday night and they hadn't checked it again, so when Wednesday morning rolled around, I had no idea what to expect.
Wednesday at about 11 the nurse came in and told me that her ANC was only 300. She didn't come out and say it, but I don't think she thought they would let us go home. Then an hour or so later the doctors come in and say, "so, do you want to go home today?" I was surprised but they said that we could. Then it got a little weird. I asked when we needed to come back and have her checked again and they said that we didn't. Ummm...OK???? So they tell me they'll get the paperwork ordered and they leave.
Clara Jean wanted to go down to the playroom so on our way down the hall I asked if our nurse could come down there and talk to us. We were playing Connect Four, Clara was beating me for the third time, when she came in. I asked the nurse when Clara Jean could go back to school, she said when her ANC was 750. We talked for a minute about neutropenia and how many kids it effects. Then I asked her how long it would take before we could leave. She said, "well, that still depends on her numbers." Then I realize that she doesn't know we've been released. I told her and she was surprised, "really???" she says. I told her that the doctor told me that we can leave and that she isn't planning on checking her again and that I am concerned about knowing when she can go back to school, if they aren't going to check her counts again. She tells me she'll be back in a few and leaves.
When she comes back in she tells me that she has talked to the case manager, a lady over in oncology. They have scheduled appointments for Friday and Tuesday to have her counts checked. If her counts are good enough on Friday, they'll cancel the Tuesday appointment and Clara can go to school.
Later, after we are home, I am worrying. I don't understand all the conflicting stories and I am feeling unsure about her being home. So after talking to a friend or two about it I decide to call Dr. Whitlock and talk to him. He calls me back pretty quickly and does a nice job of explaining the decision to let CJ come home and the risks that we are still facing. No school, no public places, lots of hand washing and Lysol wipes.
Tuesday, September 1, 2009
Day Two
Clara Jean is still in the hospital. Her best case scenerio is going home tomorrow. I thought that they were going to check her counts early this morning and tomorrow morning. We were told that if they went up both times that she would be able to go home tomorrow. Well, they didn't check her counts today. I don't know why but I am going to ask the doctor when he comes in.
Clara is feeling OK. Not good, not bad. She isn't really eating and mostly just stares at the TV. She really likes to watch TV, so she is in TV heaven. Non-stop, all the kid channels!
More later...
Clara is feeling OK. Not good, not bad. She isn't really eating and mostly just stares at the TV. She really likes to watch TV, so she is in TV heaven. Non-stop, all the kid channels!
More later...
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