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.

Thursday, April 1, 2004

Thursday, April 1, 2004 5:57 AM CST

Luke here. This post is mostly Susan's, but I have added some of my thoughts on this anniversary to the bottom of Susan's first paragraph.

April 1 - one year from diagnosis. My overwhelming feeling about today is how grateful I am that Nathan is still with us one year later and currently NED. Today he will be getting treatments to help keep the cancer from returning and although very difficult I am thankful for this too.

Luke here adding some musings on this anniversary. I've been thinking a lot about what today means to me. Susan summed it up well. I'm grateful and happy that Nathan is still with us one year later and is at such a good point in his overall health. So many of you have followed our family so closely through this journal. We spend a lot of time on status, but also a fair amount on pain, fear, and other not so happy stuff. I just want to encourage you all to use this day as we are. Sit back, take a deep breath, and take some joy in how far Nathan has come in this past year.

Nathan's day yesterday was better. He still had quite a bit of lingering pain and a little fever but not as bad as the previous day. We are wondering if the fevers have to do with him getting his GM-CSF by IV instead of by shot. Some kids get fevers from the medicine and maybe for Nathan the difference of getting it over several hours instead of in a shot is the cause.

We had to wait quite a while to get a bed yesterday and Nathan was so tired of waiting. He did well but it was hard for him. Poor kid hates waiting. He has had to wait so much in the last year and he is so good but he is always telling us waiting is hard.

Well - we are off in the rain for another day of pain...hoping today is even better than yesterday.

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