Thursday, March 31, 2005 6:01 PM CST
All Clear!!!!!!
Bone marrow and biopsy are both clear.
We are very relieved. We still need to do a MIBG scan and CT scan as part of his quarterly workup, but we are going to hold off until we get back from Disneyworld.
Thank you everyone for all your thoughts and prayers.
Wednesday, March 30, 2005
Wednesday, March 30, 2005 10:08 AM CST
The bone marrows went fine yesterday. Nathan is such a trooper. I told him the night before about it and that when he woke up he could have apple juice and jello. He was excited about that. He was excited in the way that I knew it was his coping mechanism. We could learn a lot from him.
He did fine with the procedure and was only moderately cranky upon wakening. He always finds something to fixate on and get upset about and this time his milk didn't taste right. We finally got to leave and went and got him a toy (it took 3 pokes to place his IV and so he was owed one!) ad then we picked up Julia and went to Red Robin for an early dinner.
The bone marrow should be looked at this morning. The bone biopsy takes a few days to prepare and so those results will not be available today. We could find cancer in both, one and not the other or neither.
Luke talked to Nathan's main doctor on Monday and got a few questions answered. The reason they wouldn't do the MIBG scan this week, was that basically, they feel there is no point in doing it if he has relapsed.
Now, we know that long-term survival for relapsed stage IV neuroblastoma is about 0� However, we have been around the NB world long enough to know that with some not so horrible treatments, kids with a relapse can often survive for several years with good quality of life. So - in our minds there would be no reason to give up. We also know there are lots of doctors around who think that way too. Most of these are research doctors who see these kids. So - I guess I am not surprised his local doctors feel the way they do - but I am disappointed. I certainly hope they will agree to provide support services to Nathan, should he relapse and get treatments elsewhere.
So - now we wait for results.....Please keep up those prayers for clean bone and bone marrow!
p.s. check out the photo album page
The bone marrows went fine yesterday. Nathan is such a trooper. I told him the night before about it and that when he woke up he could have apple juice and jello. He was excited about that. He was excited in the way that I knew it was his coping mechanism. We could learn a lot from him.
He did fine with the procedure and was only moderately cranky upon wakening. He always finds something to fixate on and get upset about and this time his milk didn't taste right. We finally got to leave and went and got him a toy (it took 3 pokes to place his IV and so he was owed one!) ad then we picked up Julia and went to Red Robin for an early dinner.
The bone marrow should be looked at this morning. The bone biopsy takes a few days to prepare and so those results will not be available today. We could find cancer in both, one and not the other or neither.
Luke talked to Nathan's main doctor on Monday and got a few questions answered. The reason they wouldn't do the MIBG scan this week, was that basically, they feel there is no point in doing it if he has relapsed.
Now, we know that long-term survival for relapsed stage IV neuroblastoma is about 0� However, we have been around the NB world long enough to know that with some not so horrible treatments, kids with a relapse can often survive for several years with good quality of life. So - in our minds there would be no reason to give up. We also know there are lots of doctors around who think that way too. Most of these are research doctors who see these kids. So - I guess I am not surprised his local doctors feel the way they do - but I am disappointed. I certainly hope they will agree to provide support services to Nathan, should he relapse and get treatments elsewhere.
So - now we wait for results.....Please keep up those prayers for clean bone and bone marrow!
p.s. check out the photo album page
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Update (3/30 4:36 PM MT)
Luke here. I just got off the phone with Nathan's doctor. Predictably, the other doctor had to be out of the office today so he did not get to the hospital to review slides with the pathologist. So, we have another day of waiting on bone marrow results. We are still seeing other test results tend to be good. They reran his blood labwork and the more accurrate indicator of non-specific inflammation was normal. It had been elevated when he was having his hip pain. His counts are also all very normal (for Nathan anyway), which is a good sign. So, we just keep waiting and hoping. I know many of you have been checking frequently today and we thank you for your continued thoughts and prayers.
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Monday, March 28, 2005
Monday, March 28, 2005 12:46 AM CST
Hello - I hope you all had a happy Easter! We did. The easter bunny came and hid eggs and brought baskets. Julia was especially pleased that the Easter Bunny brought her a "my little pony". We all went to church. Julia had a new dress and Nathan had a new tie and they looked very nice (I'll post some pictures soon). Unfortunately, on Thursday, Nathan cut Julia's hair. It looked awful. The biggest problem is he cut a big chunk of bangs off right in the middle of her forehead. I managed to disguise the problem for a few hours for Easter with some hairspray. Needless to say I was really angry at both of them on Thursday!
They both enjoyed Sunday school and I enjoyed the music we sang for Easter. We came home for a while and then went to spend the rest of the afternoon and evening at a friend's house. We watched some basketball and hid eggs outside for the kids to find and then had dinner. All in all - avery happy Easter.
I find myself in a not-so-happy mood today. I am increasing frustrated and angry with all the doctors involved. A good part of the frustration is coming from within, but I am upset at the way things have transpired. First off - it is unacceptable that it took 3 days to get an MRI result. Then - a bone marrow cannot be scheduled until Tuesday. I find out it is tenetively set for 12:30. I ask for a final confirmation and am promised a call back and never get one. I am mad that the procedure is at 12:30 and I know why it is. The intensivist who works in the PICU doesn't like morning procedures. He pitched a fit the first time we were there even though he wasn't the doctor doing it. He says it is too busy a time. He complained right there in front of all of us. He obviously doesn't care that a 4 year old will have to go without food for 18 hours - he only cares what is convenient for him. I finally got the confirmation that the time is 12:30 so I ask about the food restriction and she tells me 8 hours. I had to then say - isn't it only 4 hours of clear liquids? She goes back and says yes. So Nathan can have juice and jello and broth tomorrow morning. If I hadn't asked her or known better he would have had NOTHING at all for 18 hours. I called Thrusday and left a message that couldn't Nathan have all his scans this week since he was due for them all anyway? I call back on Friday and get the message that no - they don't want to do that. OK - fine - but it doesn't make sense to me. Why not have all the scans to have the big picture. Every test we have - they seems to then need yet another one to really know what is going on. We know he has to have these other tests anyway - so why not do them? This is week 3 of this saga and I don't think anyone understand the extreme amount of stress this is put on Luke and I. I am at the breaking point and I cannot take another week of it should they decide to do scans next week instead of this week. Hopefully his bone marrow will be negative and we can just do the rest of the scans in May. If his bone marrow is positive - they will want to do these other scans right away and we will be waiting to see how bad it is, instead of already having had the MIBG scan and already knowing.
So - as you can tell I could go on and on about this. I hope I can get over some of this anger soon.
Who knows when we will get results back on the bone marrows. I won't even begin to guess and I suppose I won't even believe them if they tell us when to expect them. We will let you know when we hear something and I can continue to practice my hobby of calling the clinic and asking for answers every day and making the staff dislike me more and more every day.
Hello - I hope you all had a happy Easter! We did. The easter bunny came and hid eggs and brought baskets. Julia was especially pleased that the Easter Bunny brought her a "my little pony". We all went to church. Julia had a new dress and Nathan had a new tie and they looked very nice (I'll post some pictures soon). Unfortunately, on Thursday, Nathan cut Julia's hair. It looked awful. The biggest problem is he cut a big chunk of bangs off right in the middle of her forehead. I managed to disguise the problem for a few hours for Easter with some hairspray. Needless to say I was really angry at both of them on Thursday!
They both enjoyed Sunday school and I enjoyed the music we sang for Easter. We came home for a while and then went to spend the rest of the afternoon and evening at a friend's house. We watched some basketball and hid eggs outside for the kids to find and then had dinner. All in all - avery happy Easter.
I find myself in a not-so-happy mood today. I am increasing frustrated and angry with all the doctors involved. A good part of the frustration is coming from within, but I am upset at the way things have transpired. First off - it is unacceptable that it took 3 days to get an MRI result. Then - a bone marrow cannot be scheduled until Tuesday. I find out it is tenetively set for 12:30. I ask for a final confirmation and am promised a call back and never get one. I am mad that the procedure is at 12:30 and I know why it is. The intensivist who works in the PICU doesn't like morning procedures. He pitched a fit the first time we were there even though he wasn't the doctor doing it. He says it is too busy a time. He complained right there in front of all of us. He obviously doesn't care that a 4 year old will have to go without food for 18 hours - he only cares what is convenient for him. I finally got the confirmation that the time is 12:30 so I ask about the food restriction and she tells me 8 hours. I had to then say - isn't it only 4 hours of clear liquids? She goes back and says yes. So Nathan can have juice and jello and broth tomorrow morning. If I hadn't asked her or known better he would have had NOTHING at all for 18 hours. I called Thrusday and left a message that couldn't Nathan have all his scans this week since he was due for them all anyway? I call back on Friday and get the message that no - they don't want to do that. OK - fine - but it doesn't make sense to me. Why not have all the scans to have the big picture. Every test we have - they seems to then need yet another one to really know what is going on. We know he has to have these other tests anyway - so why not do them? This is week 3 of this saga and I don't think anyone understand the extreme amount of stress this is put on Luke and I. I am at the breaking point and I cannot take another week of it should they decide to do scans next week instead of this week. Hopefully his bone marrow will be negative and we can just do the rest of the scans in May. If his bone marrow is positive - they will want to do these other scans right away and we will be waiting to see how bad it is, instead of already having had the MIBG scan and already knowing.
So - as you can tell I could go on and on about this. I hope I can get over some of this anger soon.
Who knows when we will get results back on the bone marrows. I won't even begin to guess and I suppose I won't even believe them if they tell us when to expect them. We will let you know when we hear something and I can continue to practice my hobby of calling the clinic and asking for answers every day and making the staff dislike me more and more every day.
Thursday, March 24, 2005
Thursday, March 24, 2005 7:49 AM CST
Well - STILL no MRI results. At this point we don't even know if they are available. Nathan's doctor said he would watch for the results from home and call us with them, but it has been 3 days since the scan now so surely the report is in. I supposed we will call the office today and see if the other doctor could get the report for us.
I will update if we get some results.
Well - STILL no MRI results. At this point we don't even know if they are available. Nathan's doctor said he would watch for the results from home and call us with them, but it has been 3 days since the scan now so surely the report is in. I supposed we will call the office today and see if the other doctor could get the report for us.
I will update if we get some results.
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Ok - well we have results and they are good news/bad news.
The good news is that his left hip was most certainly the fluid - not cancer. The bad news is they saw a "spot" on his right pelvis. This spot could be anything - but with Nathan's history they feel the need to look into it further. They feel they cannot accurately biopsy the spot itself and so they will do a bone marrow biopsy. The doctor feels that if that spot is caused by cancer the bone marrow in the right hip would certainly be involved. If the bone marrow is normal we will assume the spot is something else.
They are trying to get the bone marrow biopsy done on Tuesday.
So - the roller coaster continues.....
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(Luke 3/24 1:30 PM MST) I don't have any news to add. We will be dealing with the same uncertainty throughout the weekend. Bone marrows will be performed on Tuesday. I just really wanted to thank everyone for their continued support. We have received so many wonderful guestbook entries, emails, phone calls, and cards. Your support is very appreciated and important to our family. Thank you.
Tuesday, March 22, 2005
Tuesday, March 22, 2005 6:07 PM CST
Can you belive the radiologist has still not entered in his report?? Yep, but I will tell you what we know.
Nathan's oncologist looked at the scans online and he is no radiologist but he didn't see any of the "lytic" changes that would indicate cancer causing the pain. He also thinks he may have seen effusion (fluid) by the joint. This can happen sometimes when a child has had a virus and for some reason it travels to the hip joint. This fluid can cause pain (called transient synovitis). He really wants to see if the radiologist sees the fluid since he (onc) is no expert at reading MRIs.
Another piece of good news is that half of Nathan's urine test came back well within the normal range. Usually the two numbers are pretty in tune with eachother so we would not expect the second half to come back elevated either. This is the test that checks for catacholamines in the urine. Catacholamines are produced by active neuroblastoma. Jut because they are normal doesn't mean there is no neuroblastoma there - but it is another good sign.
So - this means Nathan could just have this fluid in his hip. If it is that - the pain really should go away in the next day or two.
The next step is to go ahead and take some bone marrow from Nathan. Unfortunately the office is too busy to do that this week. Hopefully they will do it on Monday.
Nathan's doctor is off the rest of the week but has promised to check for the report from home and call us as soon as the report is in. There really is no excuse for it to not be in yet. That is pretty irritating.
Anyway - keep the thoughts and prayers coming - they may be working!
I will update you when I hear something.
Can you belive the radiologist has still not entered in his report?? Yep, but I will tell you what we know.
Nathan's oncologist looked at the scans online and he is no radiologist but he didn't see any of the "lytic" changes that would indicate cancer causing the pain. He also thinks he may have seen effusion (fluid) by the joint. This can happen sometimes when a child has had a virus and for some reason it travels to the hip joint. This fluid can cause pain (called transient synovitis). He really wants to see if the radiologist sees the fluid since he (onc) is no expert at reading MRIs.
Another piece of good news is that half of Nathan's urine test came back well within the normal range. Usually the two numbers are pretty in tune with eachother so we would not expect the second half to come back elevated either. This is the test that checks for catacholamines in the urine. Catacholamines are produced by active neuroblastoma. Jut because they are normal doesn't mean there is no neuroblastoma there - but it is another good sign.
So - this means Nathan could just have this fluid in his hip. If it is that - the pain really should go away in the next day or two.
The next step is to go ahead and take some bone marrow from Nathan. Unfortunately the office is too busy to do that this week. Hopefully they will do it on Monday.
Nathan's doctor is off the rest of the week but has promised to check for the report from home and call us as soon as the report is in. There really is no excuse for it to not be in yet. That is pretty irritating.
Anyway - keep the thoughts and prayers coming - they may be working!
I will update you when I hear something.
Monday, March 21, 2005
Monday, March 21, 2005 12:58 AM CST
Well - we went in this morning for an MRI and xrays. We wanted to do it without Nathan being sedated but the radiologist was really against the idea so we let them sedate him. In the past he has been in an awful state after sedation - but today it was pretty mild.
I expect a call later this afternoon from his doctor to let us know the results. Who knows if this tets will give us any results or just lead us to finally do bone marrows - which will really give us the answer.
We had a good day on Sunday. We went to church as usual and had a normal family day. Nathan's leg still hurts - but it is mild and is not keeping him from playing.
I will update the page later - though I don't expect any kind of definitive answer from just an MRI.
Well - we went in this morning for an MRI and xrays. We wanted to do it without Nathan being sedated but the radiologist was really against the idea so we let them sedate him. In the past he has been in an awful state after sedation - but today it was pretty mild.
I expect a call later this afternoon from his doctor to let us know the results. Who knows if this tets will give us any results or just lead us to finally do bone marrows - which will really give us the answer.
We had a good day on Sunday. We went to church as usual and had a normal family day. Nathan's leg still hurts - but it is mild and is not keeping him from playing.
I will update the page later - though I don't expect any kind of definitive answer from just an MRI.
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Update but no update - 7:00 pm
No phone calls from the doctor today. Nathan's leg has been mostly fine today, bus as is the pattern - it was bothering him right before bedtime.
I assume we will get a call tomorrow.
We will continue with our day as planned tomorrow The kids are going to the sitters where they will have a birthday party and do crafts. There is a little boy there this week (spring break) that Nathan really likes and so they should have a fun day.
I am assuming that Nate may still ahve more tests and procedures this week.
I have a feeling that if this is relapse it is going to be somewhat a different experience in that people might not we as willing to do things as urgently for him. There might need to be more pushing from us this time.
Anyway - I will keep the journal updated as I hear anything.
Thanks for your emails and guestbook entries.
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Saturday, March 19, 2005
Saturday, March 19, 2005 1:57 PM CST
Well - the pain is back today.
I have to admit both Luke and I really are feeling like this is relapse. The way the pain came and went and came back is very much like what NB would do.
Nathan has an MRI on Monday morning and we will go from there. Meanwhile we are trying to get through the weekend. Though Nathan is in some pain - he is still playing and having a good day - which is all we could ask for.
Friday, March 18, 200
Friday, March 18, 2005 11:45 AM CST
Well - the last results are in and they are elevated (sed rate and crp). They indicate inflammation in his body. His doctor wants him to have an MRI and xrays. Unfortunately we cannot get those until Monday or Tuesday. His doctor is definately concerned that this is relapse . I didn't get a feeling for what else it could be. The thing is - he feels great today. If it is neuroblastoma - he will start limpin again - but who knows how soon.
I wish I knew what else could be causing the elevations but I don't. They will recheck those levels next week also. If they go down - it is not cancer.
So, basically - we are in limbo for a few days. Which is the worst place to be.
Well - the last results are in and they are elevated (sed rate and crp). They indicate inflammation in his body. His doctor wants him to have an MRI and xrays. Unfortunately we cannot get those until Monday or Tuesday. His doctor is definately concerned that this is relapse . I didn't get a feeling for what else it could be. The thing is - he feels great today. If it is neuroblastoma - he will start limpin again - but who knows how soon.
I wish I knew what else could be causing the elevations but I don't. They will recheck those levels next week also. If they go down - it is not cancer.
So, basically - we are in limbo for a few days. Which is the worst place to be.
Thursday, March 17, 2005
Thursday, March 17, 2005 5:52 PM CST
Well - so far the news as as good as it could be.
Nathan woke up still limping but it has gotten alot better during the day. The doctor did an exam and he didn't even see the pain until I showed him what motion I could do that caused it. Nathan admitted it was less. However - it could still be cancer and the pain could come and go and so I go to the next part - the labs.
His blood counts (hemoglobin, etc) were normal. At diagnosis he was anemic due to the bone marrow dysfuntion caused by the cancer - but that would only happen at very high levels of cancer.
We just now got a call on some more of his labs:
LDH is normal. This is elevated when there is a lot of tumor activity. So - it doesn't mean there is none - but it does indicate he doesn't have a massive relapse.
His other labs that show how his bone marrow are working came back fine - once again indicating there is not a massive amount of cancer in his bone marrow.
We are still waiting for (and at this point won't get until tomorrow) his sed rate and crp. This would be elevated if there is inflammation happening in his body. If they come back elevated we will immediately start doing tests to find a cause. It could be cancer, but it also could be an infection. If it is elevated - he will have some xrays and an MRI - but I am not sure how soon they would get him in for those.
I asked his doctor - would he expect the LDH to be elevated if it was cancer that was causing the pain and he said yes. So - while we cannot rule out cancer at this point, it doesn't seem as likely as it did yesterday.
We did collect his urine for the HVA/VMA test which is elevated if there is neuroblastoma. That test takes at least a week to come back though.
We will probably do scans in the next few weeks.
I am so thankful to have the hope that this is not a relapse. Yesterday we were so sure and at least, today we feel there is a good chance it is not relapse. We don't want to get our hopes up too high though.
If it is relapse - we have certainly dealt with the fear now and are ready to face it if it should happen.
Nathan told us he had a good day. I think it is mostly because his DAD came with him for all of this! He just came up to me while I was writing this and kissed me on the cheek.
So - we'll see what the sed rate and crp are tomorrow and go from there.
Well - so far the news as as good as it could be.
Nathan woke up still limping but it has gotten alot better during the day. The doctor did an exam and he didn't even see the pain until I showed him what motion I could do that caused it. Nathan admitted it was less. However - it could still be cancer and the pain could come and go and so I go to the next part - the labs.
His blood counts (hemoglobin, etc) were normal. At diagnosis he was anemic due to the bone marrow dysfuntion caused by the cancer - but that would only happen at very high levels of cancer.
We just now got a call on some more of his labs:
LDH is normal. This is elevated when there is a lot of tumor activity. So - it doesn't mean there is none - but it does indicate he doesn't have a massive relapse.
His other labs that show how his bone marrow are working came back fine - once again indicating there is not a massive amount of cancer in his bone marrow.
We are still waiting for (and at this point won't get until tomorrow) his sed rate and crp. This would be elevated if there is inflammation happening in his body. If they come back elevated we will immediately start doing tests to find a cause. It could be cancer, but it also could be an infection. If it is elevated - he will have some xrays and an MRI - but I am not sure how soon they would get him in for those.
I asked his doctor - would he expect the LDH to be elevated if it was cancer that was causing the pain and he said yes. So - while we cannot rule out cancer at this point, it doesn't seem as likely as it did yesterday.
We did collect his urine for the HVA/VMA test which is elevated if there is neuroblastoma. That test takes at least a week to come back though.
We will probably do scans in the next few weeks.
I am so thankful to have the hope that this is not a relapse. Yesterday we were so sure and at least, today we feel there is a good chance it is not relapse. We don't want to get our hopes up too high though.
If it is relapse - we have certainly dealt with the fear now and are ready to face it if it should happen.
Nathan told us he had a good day. I think it is mostly because his DAD came with him for all of this! He just came up to me while I was writing this and kissed me on the cheek.
So - we'll see what the sed rate and crp are tomorrow and go from there.
Thursday, March 17, 2005 - 1
Thursday, March 17, 2005 0:45 AM CST
Well - I never meant for it to be so long until I wrote again. Unfortunately we are a wreck around here.
On Wednesday (16th)- Nathan woke up with hip pain. It only got worse during the day and is exactly like the pain he had on diagnosis and in the same hip. He denies having hurt it in any way and said it just started hurting in his sleep.
We are taking him into his oncologist Thursday and will hope to start some tests. It is hard to say how soon we may get any answers.
Please keep Nathan in your thoughts and prayers that this be anything but neuroblastoma.
Well - I never meant for it to be so long until I wrote again. Unfortunately we are a wreck around here.
On Wednesday (16th)- Nathan woke up with hip pain. It only got worse during the day and is exactly like the pain he had on diagnosis and in the same hip. He denies having hurt it in any way and said it just started hurting in his sleep.
We are taking him into his oncologist Thursday and will hope to start some tests. It is hard to say how soon we may get any answers.
Please keep Nathan in your thoughts and prayers that this be anything but neuroblastoma.
Wednesday, March 9, 2005
Wednesday, March 9, 2005 10:48 PM CST
Yes - it is a midweek update!
Nathan is slowly recovering from being sick. He is still quite tired and still coughing ocassionally. His fatigue is the worst symptom. It is hard to see him dragging like that - it brings back too many bad memories.
He was so tired he did not finish his swim lesson and I kept him home from preschool so he could have a nap. I woke up this morning to him screaming hysterically at Julia because she left the bedroom first and apparently it was his turn to leave the bedroom first. That is the thing with Nathan - everything is highly emotional. He couldn't just be mad at hear - had had to completely melt down about it. I get so tired of every little thing being a complete meltdown with him. I keep wondering at what age do kids NOT cry about every thing. I have been having talks with them about being first - they life to fight about begin first to get into the van. Even though they each have their own carseat so they already know were they will be sitting. I just don't get it!
We have determined that Nathan and narcotics just don't mix. We had him on codeine cough medicine for 4 nights. On night #5 we felt he no longer needed it. Well - he was up half the night freaking out. It seemed pretty clear to me it was related to the narcotics and the withdrawl from them. Nathan in any kind of state effected by either narcotics, sedating medicines or steroids is just plain out of his mind. Coupled with this is the fact that Nathan begged me for the cough medicine tonight and got really upset when I said no. In NY he used to get so happy about getting his dilauded and he was very particular about it. One time a nurse put it in his line fairly far away from his body instead of pushing it in right at the enterence to his body. He was so mad that he didn't get the rush. Another time he asked us for tylenol and when we told him it wasn't the red kind (with codeine) he told us to nevermind. The nurses in NY would joke and refer to Nathan as a dope fiend - you know how it is when you joke - often there is a piece of truth in it and it seems pretty clear that he is easily affected by these medicines in all kinds of ways and we are going to try to steer clear of them when we can.
Nathan goes into the oncologist on Friday. I am hoping he is feeling better. I felt fine when he was really sick and I knew why he felt bad - but now that it is lingering it really bothers me.
So - that is what is going on around here. I will update again this weekend.
Yes - it is a midweek update!
Nathan is slowly recovering from being sick. He is still quite tired and still coughing ocassionally. His fatigue is the worst symptom. It is hard to see him dragging like that - it brings back too many bad memories.
He was so tired he did not finish his swim lesson and I kept him home from preschool so he could have a nap. I woke up this morning to him screaming hysterically at Julia because she left the bedroom first and apparently it was his turn to leave the bedroom first. That is the thing with Nathan - everything is highly emotional. He couldn't just be mad at hear - had had to completely melt down about it. I get so tired of every little thing being a complete meltdown with him. I keep wondering at what age do kids NOT cry about every thing. I have been having talks with them about being first - they life to fight about begin first to get into the van. Even though they each have their own carseat so they already know were they will be sitting. I just don't get it!
We have determined that Nathan and narcotics just don't mix. We had him on codeine cough medicine for 4 nights. On night #5 we felt he no longer needed it. Well - he was up half the night freaking out. It seemed pretty clear to me it was related to the narcotics and the withdrawl from them. Nathan in any kind of state effected by either narcotics, sedating medicines or steroids is just plain out of his mind. Coupled with this is the fact that Nathan begged me for the cough medicine tonight and got really upset when I said no. In NY he used to get so happy about getting his dilauded and he was very particular about it. One time a nurse put it in his line fairly far away from his body instead of pushing it in right at the enterence to his body. He was so mad that he didn't get the rush. Another time he asked us for tylenol and when we told him it wasn't the red kind (with codeine) he told us to nevermind. The nurses in NY would joke and refer to Nathan as a dope fiend - you know how it is when you joke - often there is a piece of truth in it and it seems pretty clear that he is easily affected by these medicines in all kinds of ways and we are going to try to steer clear of them when we can.
Nathan goes into the oncologist on Friday. I am hoping he is feeling better. I felt fine when he was really sick and I knew why he felt bad - but now that it is lingering it really bothers me.
So - that is what is going on around here. I will update again this weekend.
Monday, March 7, 2005
Monday, March 7, 2005 8:39 AM CST
Well - the past week was all about sick kids. In fact I DID make that appointment for Nathan but had to cancel it since he got sick.
Julia started coughing on Monday and got a fever on Wednesday. Nathan started coughing on Wednesday and had a fever Thursday, Friday and Saturday. Today they are both better but with a lingering cough.
It has been a long time since Nathan was sick and boy - he really wallows in it. I guess he deserves to be however he wants about it, but he sure makes himself even more miserable than he feels just by moaning, groaning and complaining.
We did get confirmation of our Make a Wish trip in April and are now just waiting to find out where we will stay. The special place that kids usually stay for Make a Wish is probably full and so we will see where they put us.
Luke is traveling this week (starting tomorrow). I have Choir Tuesday and Thursday nights and so I have sitters lined up. I was supposed to do choir on Friday night as well, but that would have been just too much babysitting! I actually have choir tonight too (and yesterday morning and last night!). Our big concert is Palm Sunday. After easter it will calm down again.
I am unsure if I will take the kids to swimming lessons this morning. Nathan has swimming lessons, preschool, and they come with me to choir on Mondays and go to the nursery. I don't know if it would be wise to subject him to so many things today so I need to pick and choose.
I will try to reschedule his oncology appointment for Friday.
So - nothing exciting going on here with all the sickness.... So far Luke and I haven't gotten it and hope it stays that way.
Thanks for checking in with us!
Susan
Well - the past week was all about sick kids. In fact I DID make that appointment for Nathan but had to cancel it since he got sick.
Julia started coughing on Monday and got a fever on Wednesday. Nathan started coughing on Wednesday and had a fever Thursday, Friday and Saturday. Today they are both better but with a lingering cough.
It has been a long time since Nathan was sick and boy - he really wallows in it. I guess he deserves to be however he wants about it, but he sure makes himself even more miserable than he feels just by moaning, groaning and complaining.
We did get confirmation of our Make a Wish trip in April and are now just waiting to find out where we will stay. The special place that kids usually stay for Make a Wish is probably full and so we will see where they put us.
Luke is traveling this week (starting tomorrow). I have Choir Tuesday and Thursday nights and so I have sitters lined up. I was supposed to do choir on Friday night as well, but that would have been just too much babysitting! I actually have choir tonight too (and yesterday morning and last night!). Our big concert is Palm Sunday. After easter it will calm down again.
I am unsure if I will take the kids to swimming lessons this morning. Nathan has swimming lessons, preschool, and they come with me to choir on Mondays and go to the nursery. I don't know if it would be wise to subject him to so many things today so I need to pick and choose.
I will try to reschedule his oncology appointment for Friday.
So - nothing exciting going on here with all the sickness.... So far Luke and I haven't gotten it and hope it stays that way.
Thanks for checking in with us!
Susan
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