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.

Monday, August 8, 2005

Monday, August 8, 2005 12:16 AM CDT

Update 8:55 PM

Well - first off his bone marrow is clean....very good news. We have a tentative game plan pending a meeting of the neuroblastoma team tomorrow afternoon. The plan is 2 rounds of chemo (irronotecan and temador). These are the two agents that we were due to start before surgery. The main side effect will be diarrhea and his counts will hopefully stay in a good range to go to school.

They want to get scans in about 4 weeks. We might delay that a little because after the 2 rounds of chemo Nathan will probably enter into a new trial for a neuroblastoma vaccine being done here in NY. We don't have any details about it - just that it is due to open in 4 to 6 weeks. He won't be eligible for many studies because he most likely has no measurable disease anymore. Not a bad thing - just not too many options.

He will most likely not be doing any antibodies again because they work mostly on bone marrow disease and prevention for relapse in bone marrow and not on soft tissue tumors like the one Nathan had.

He still should be on track to get out of the hospital tomorrow. We will go back to the surgeons at the end of the week and then we are free to go. Tenatively we will be coming home on Saturday. Nathan may start chemo as soon as Monday. The first day of school is Monday and it is looking good that he will be there. Chemo can begin in the afternoon.

So - keep fingers crossed that all these current plans hold and he gets out tomorrow and we get home this weekend.

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Nathan is having a really good day so far. They let him eat regular food and he is really enjoying it. We got him up and walking and he is doing great with that. He stayed and played in the playroom for a while. He is walking without our assistance.

We haven't talked to any oncologists today about treatment. I asked the nurse to find out if they want a HAMA test because his doctor mentioned (last week) that he would do one tomorrow and so they would need to draw the blood today. We are also hoping to hear the bone marrow results soon.

Luke and I are assuming they will let him out tomorrow. There doesn't seem to be much reason to keep him here anymore. Once again - no one has told us anything though.

I will update with more later if anything new crops up.

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