Welcome to Nathan's Cancer Journey

This blog is a reposting of Nathan's Caringbridge page which we updated throughout his battle with Neuroblastoma.

Nathan was born on June 16, 2000, diagnosed with Stage IV Neuroblastoma on April 1, 2003 and died on July 29, 2007.

I have posted the journal here to make it easier to look up by date and also to be able to easily add pictures to the journal entries.

Some of the pictures go along with the text, but many of the pictures you will see were pictures taken on the same date the journal was added, even if the pictures have nothing to do with the text. In the future I may add additional journal entries to go along with pictures to add more explanation/memories.

I am just getting started posting the years of entries and so this will be incomplete for some time. I hope to eventually also post the guestbook entries by date as a comment on the post.

Tuesday, November 4, 2003

Tuesday, November 4, 2003 10:29 AM CST

Susan here..

Sorry for the lag in updates. We had a good weekend as a family. We had nice weather on Sunday and went for a walk together and played basketball. Yesterday I took Nathan to the clinic to see his doctor in Colorado Springs. It was good to be back there. He examined Nathan but didn't do blood counts since they were good last Thursday. We looked at his MIBG scan together and looked at the spot in his face thet seems to be lighting up a little bit. It is very faint and so we really don't know if it is anything. The doctors will have to decide if they want to radiate the area or not. We discussed his urine test because one of the cancer markers is slightly high. We are going to keep watching it. Once again - we don't really know what it means but it could mean the the remaining piece of tumor still has active cancer cells in it and is excreting the hormone that shows up in the urine test. When he had his last surgery and they examined the pathology there was one very small area of active cancer. Unfortunately this area is right by where they now realize there is more tumor so it is a possiblity there is still active cancer there. We will meet with his surgeons today to discuss what they feel they can do. We will then wait to see what the surgeon in New York think. Unfortunately this week is the Children's Oncology Group semi-annual conference and most pediatric oncologists will be there; including the surgeon in New York. This is going to make it hard to get things figured out this week.

The insurance company is legally supposed to have an approval or denial of the antibody trila by 1:30 this afternoon. State laws give them 2 business days. They officially got all the materials on Friday. We will see if we hear from them. We are fully expecting a denial and then will appeal right away.

We still don't know about how the surgery fits in the with trial since it would probably delay Nathan beginning it. He has to do it is a certain time period after tranplsant so it could cause problems. We have posed this question to the study doctor but all he told us was to send the scans for surgery to him and the surgeon so we don't have an answer to that yet.

So in summary - nobody knows anything and everything is still up in the air! We hope this changes soon and we will let you know.

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