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.

Wednesday, July 14, 2004

Wednesday, July 14, 2004 3:47 PM CDT

Hello - not too much is going on.

Nathan has been feeling a little under the weather but nothing I can put my finger on. I am happy he is going to the clinic tomorrow.

We are currently running around in circles to find out if our new insurance will cover the antibody study in New York. The way the policy reads, clinical trials will only be covered if it can be proved the patient has less than a year to live. We are having to wait until Nathan is in the system and then have NY generate the pre-authorization to then find out if it is approved or not. We do not yet know when he will be in the system. We haven't even discussed what we will do if it is denied - whether a few more rounds will make a difference to Nathan's prognosis or not.

Speaking of prognosis, I was recently asked if it has changed since diagnosis. I guess the answer is, a little. There was a chance that Nathan would not have responded to chemo. Since he did, his overall prognosis went up, but not significantly. There are lots of different statistics thrown around in the various hospitals and clinics and these statistics include children of all ages and with tumors of different biological factors. These biological factors really determine if a child will make it - they are being studied, of course but there is still a long way to go. Age is also a significant factor...infants and young babies have a much better outcome. All that said - one doctor told me that 50% will relapse. I would assume this 50% includes some children both much younger and older than Nathan so who knows what that means for him. Relapse, means eventual death about 99% of the time. Of course - not if a new therapy is discovered before then. I hope this all didn't sound too harsh and clinical and answered some questions you may be having. In my mind it is clear cut - Nathan will live or not and that is yet to be determined and all the statistics in the world can't tell us which it will be and so he is doing well now and that is what I have to keep reminding myself.

OK - well - I think I have reached my journal limit today. I will update after tomorrow's doctor's appointment.

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