Thursday, July 28, 2005

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.

************************************************
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.

*************************************************

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.