Thursday, July 28, 2005 6:57 PM CDT
Update - Friday July 29 4:07 PM
I have pretty much determined the right scans were sent. I talked to the other local oncologist and he says he did look at the scans with Nathan's regular oncologist and they believe they saw a tumor. He explained to me that with as much surgery and radiation that Nathan has had - that it is very difficult to determine what is normal tissue, versus scar tissue, versus tumor.
I looked at the scan report (written) and it seems that a big reason that relapse was determined is that they see change from the prior CT scan. The doctors in New York do not have the prior scans - nor do they have the MIBG scan which showed the bright spot. So perhaps with that data they would feel differently - I don't know.
So - who knows...we emailed the NY oncologsit (still have not actually spoken to him) and told him we would be willing to travel to NY at any time if it would help determine what is going on. We will also furnish prior scans if that would be helpful. Meanwhile Nathan will start chemo as planned and we will just see what becomes of it all.
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Update - Friday July 29 6:57 AM
Hmm - well - I got an email back from NY...but I never would have expected the answer I got...that the NY radiologist saw NO recurring tumor. Now - I was there for the MIBG scan and I saw the big lit up area where the tumor is - so I am thinking perhaps the wrong scans got sent to NY. Perhaps the wrong date. There was also a confusion when the scan arrived in NY because the scan report was missing. So, anyway, I am certain there is a tumor - we just need to figure out what has happened with the scans and most of all I am relieved not to hear something bad.
The NY oncologist is pleased with our current plan for next week - to start Nathan on a single chemo agent - ironotecan. This chemo does not affect the blood counts and can be done at home most of the time. We do have to wait and see if his platelets are high enough. Yesterday his platelets were 55,000 and they need to be 75,000. His immunity is back to very normal/high numbers so hopefully they will stay in a good range and Nathan can start school.
So - the drama continues and I will update again when we have more info.
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Good news and also some concerns.....
It has been a roller coaster day.
First off - I had my appointment and the baby looked just fine.
We got a call that the surgery has been now rescheduled for August 29. Due to doctor vacations we will have to also go on Aug 18 to meet with the radiation doctor and come back home. We are due to meet with the surgeon on Aug 25 and will stay for the surgery.
Concerns...well - Nathan's local oncologist is on vacation. We got an email late this afternoon from his NY oncologist saying he needed to get in touch with Dr. Palmer and had sent him a fax and email and had not heard back. Then he realized we had told him the local doctor was not in town and he emailed us again saying to get the other doctor to get the fax because he had some questions about NAthan's CT scan we sent there and that he was faxing the report HIS radiologist had written and needed to talk about it. This is all the information we have. I am extremely concerned that the NY radiologist has seen additional disease on the scan that our local radiologist missed. I can't really imagine a different scenario. I am terrified that he has more disease and this would change his status and make surgery not an option.
So - I guess tomorrow we will find out from the other local oncologist what this is all about but meanwhile we are very worried. I absolutely hate having partial information. I can't help but to think the worst.
Wednesday, July 27, 2005
Wednesday, July 27, 2005 8:58 AM CDT
Just an update to tell you that we have had word that Nathan's surgery has been pushed back yet again to September 14. Luke and I are very uncomfortable with that and are waiting to speak to his oncologist in New York. At this time we are considering going elsewhere for surgery - though very reluctantly.
We are really hoping that we can ge things figured out when we hear from his oncologist - but itis likely that Luke and I will have to make a big decision about timing of surgery versus surgeon and whether or not to wait in order to do the intraoperative radiation.
We are extremely frustratated because every day this tumor remains in Nathan's body it has a chance to start spreading. If that should happen his prognosis is extremely grim. We just don't know if we can stand by and wait for surgery due to administrative and scheduling problems. If his cancer should spread in that time - because they couldn't get him on the schedule that would be devastating.
So - please send all your thoughts and prayers this way for a resolution and a decision that Luke and I can feel comfortable with.
I will update when we hear anything.
Just an update to tell you that we have had word that Nathan's surgery has been pushed back yet again to September 14. Luke and I are very uncomfortable with that and are waiting to speak to his oncologist in New York. At this time we are considering going elsewhere for surgery - though very reluctantly.
We are really hoping that we can ge things figured out when we hear from his oncologist - but itis likely that Luke and I will have to make a big decision about timing of surgery versus surgeon and whether or not to wait in order to do the intraoperative radiation.
We are extremely frustratated because every day this tumor remains in Nathan's body it has a chance to start spreading. If that should happen his prognosis is extremely grim. We just don't know if we can stand by and wait for surgery due to administrative and scheduling problems. If his cancer should spread in that time - because they couldn't get him on the schedule that would be devastating.
So - please send all your thoughts and prayers this way for a resolution and a decision that Luke and I can feel comfortable with.
I will update when we hear anything.
Monday, July 25, 2005
Monday, July 25, 2005 4:47 PM CDT
Nathan's immunity is finally at a level that he can go out and about. We actually thought it would be that way today and went ahead and took him to church yesterday - just not to the nursery or Sunday School. His platlets are getting low again and so we will just have to see if they can sustain themselves or not. He will have his counts checked again on Thursday.
We got a surprise today - Nathan has a permanent tooth. We knew he had some loose teeth but weren't sure if it was normal or not. Well - the new tooth has broken through right behind the baby teeth. He is very happy to have an "adult" tooth now. Now we need to see if the loose tooth/teeth will come out on their own in the next week or two. If not, we will have them removed so we can make sure to do so while his counts are good and also before he has his surgery.
I am also off to the doctor on Thursday for another ultrasound. I am hoping the baby will be awake this time and we can get it to move around enough to finish checking all of its vital parts. As much as I have been being kicked lately I think there is a good chance.
That's about it...
Nathan's immunity is finally at a level that he can go out and about. We actually thought it would be that way today and went ahead and took him to church yesterday - just not to the nursery or Sunday School. His platlets are getting low again and so we will just have to see if they can sustain themselves or not. He will have his counts checked again on Thursday.
We got a surprise today - Nathan has a permanent tooth. We knew he had some loose teeth but weren't sure if it was normal or not. Well - the new tooth has broken through right behind the baby teeth. He is very happy to have an "adult" tooth now. Now we need to see if the loose tooth/teeth will come out on their own in the next week or two. If not, we will have them removed so we can make sure to do so while his counts are good and also before he has his surgery.
I am also off to the doctor on Thursday for another ultrasound. I am hoping the baby will be awake this time and we can get it to move around enough to finish checking all of its vital parts. As much as I have been being kicked lately I think there is a good chance.
That's about it...
Friday July 22, 2005
Friday July 22, 2005 6:24 MDT
Nathan's counts are finally starting to move up. He actually has neutrophils today which mean his immunity is starting to build. His platelets responded really well to the transfusion yesterday going to 101 from 2. He had red blood today, but probably could have gone without since it was up just a tad. Unfortunately it was a long day at the clinic - they were busy and didn't get his blood hooked up until 2.5 hours after we arrived. We were there from 9:30 to 3:00.
He will go in on Monday afternoon to check counts again.
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Thursday, July 21, 2005 5:20 PM CDT
Nathan's counts are STILL low.
He had almost no platelets (2,000) normal is over 140,000. He hasn't had any nosebleeds so we were surprised they were that low. However - he has a zillion awful bruises all over his body and head due to having such low platelets - he really looks a mess! He also needs red blood cells. He got the platelets today but will get the red blood tomorrow. His white blood count is stuck at .5 with no signs of the cells that will send it higher.
So - he will not be starting chemo next week and now there is a question of if he will even have the Temador - which could suppress his counts. He really needs to resume some sort of chemo to keep the tumor in check. BUT - he really needs good blood counts to have his surgery. I really wish they could get him in sooner. It looks like the August 1 date may not have worked anyway seeing how low his counts are still.
The good news is that he is feeling just fine. That is one reason he has so many brusises because he is running around playing like any normal 5 year old. The low counts mean that we are still housebound. It is getting really old by now. I am really hoping we see some sort of increase in his white blood cell count tomorrow - but we probably won't be able to take him out this weekend.
We are still waiting to hear that his surgery date is final. I had called just to see how many days before we would have to arrive and they said it was only pencilled in at this point. I really hope that it does not get moved back even further. His oncologist in NY is out this week - so we are hoping to find out more next week. Unfortunately Nathan's local oncologist is out next week.
Luke and I are tired and stressed....the house is a wreck..etc etc. Hopefully tomorrow will be a better day.
Nathan's counts are finally starting to move up. He actually has neutrophils today which mean his immunity is starting to build. His platelets responded really well to the transfusion yesterday going to 101 from 2. He had red blood today, but probably could have gone without since it was up just a tad. Unfortunately it was a long day at the clinic - they were busy and didn't get his blood hooked up until 2.5 hours after we arrived. We were there from 9:30 to 3:00.
He will go in on Monday afternoon to check counts again.
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Thursday, July 21, 2005 5:20 PM CDT
Nathan's counts are STILL low.
He had almost no platelets (2,000) normal is over 140,000. He hasn't had any nosebleeds so we were surprised they were that low. However - he has a zillion awful bruises all over his body and head due to having such low platelets - he really looks a mess! He also needs red blood cells. He got the platelets today but will get the red blood tomorrow. His white blood count is stuck at .5 with no signs of the cells that will send it higher.
So - he will not be starting chemo next week and now there is a question of if he will even have the Temador - which could suppress his counts. He really needs to resume some sort of chemo to keep the tumor in check. BUT - he really needs good blood counts to have his surgery. I really wish they could get him in sooner. It looks like the August 1 date may not have worked anyway seeing how low his counts are still.
The good news is that he is feeling just fine. That is one reason he has so many brusises because he is running around playing like any normal 5 year old. The low counts mean that we are still housebound. It is getting really old by now. I am really hoping we see some sort of increase in his white blood cell count tomorrow - but we probably won't be able to take him out this weekend.
We are still waiting to hear that his surgery date is final. I had called just to see how many days before we would have to arrive and they said it was only pencilled in at this point. I really hope that it does not get moved back even further. His oncologist in NY is out this week - so we are hoping to find out more next week. Unfortunately Nathan's local oncologist is out next week.
Luke and I are tired and stressed....the house is a wreck..etc etc. Hopefully tomorrow will be a better day.
Monday, July 18, 2005
Monday, July 18, 2005 8:34 AM CDT
UPDATE
Nathan's white blood count is up a little - he is still pretty low for immunity. His platelets were low - but held pretty good all weekend and so they may actually be on their way back up and so he wasn't given any.
He IS off the antibiotics. He is on neupogen to raise his white count - he got to choose if he wanted to get a new line in his port or to take the line out and get a shot for two days instead. He chose the shots and is happy to be without the line.
He will go back on Thursday for counts.
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We had a very good weekend. We did go up to Grand Lake and it was so refreshing to be up in the mountains. We mostly just hung around the house and went to town. We drove through Rocky Mountain National Park on the way home yesterday and while it made for a longer drive we really enjoyed it. Nathan was surprised how cold it was at the top.
Nathan is feeling fine. We expect his counts to be up today (though his platelets will likely still be lagging behind). He goes to the clinic at 10:00 today. At the very least I hope he is taken off the antibiotics.
Mike and Kathy will head home tomorrow. We have enjoyed their visit so much and will be sad to see them go.
I will update on the top of this later after the clinic.
UPDATE
Nathan's white blood count is up a little - he is still pretty low for immunity. His platelets were low - but held pretty good all weekend and so they may actually be on their way back up and so he wasn't given any.
He IS off the antibiotics. He is on neupogen to raise his white count - he got to choose if he wanted to get a new line in his port or to take the line out and get a shot for two days instead. He chose the shots and is happy to be without the line.
He will go back on Thursday for counts.
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We had a very good weekend. We did go up to Grand Lake and it was so refreshing to be up in the mountains. We mostly just hung around the house and went to town. We drove through Rocky Mountain National Park on the way home yesterday and while it made for a longer drive we really enjoyed it. Nathan was surprised how cold it was at the top.
Nathan is feeling fine. We expect his counts to be up today (though his platelets will likely still be lagging behind). He goes to the clinic at 10:00 today. At the very least I hope he is taken off the antibiotics.
Mike and Kathy will head home tomorrow. We have enjoyed their visit so much and will be sad to see them go.
I will update on the top of this later after the clinic.
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