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, April 13, 2005

Wednesday, April 13, 2005 6:59 PM CDT

Julia saw the cardiologist. They now say she definitely has Kawasaki's disease. Her platelets were 964,000 which is even higher than when she was treated (normal is around 300,000). Her sed rate (measures inflammation) is still extremely high at 103 (normal from 1 - 10). Her echo showed some changes in her coronary arteries but no coronary artery aneurisms (which is good). These slight changes are something they usually see at diagnosis and they should go away in a week or so. Her doctor said he personally has never seen a child develop the aneurisms more than two days after treatment if they don't have them already - so he is pretty confidant that she won't develop any.

He did caution us that she really should not be running around or exerting herself in any manner. Her heart is inflamed and she could potentially cause heart damage if she is too active. That said - he encouraged us to go ahead with our trip so long as she rides in a stroller and we keep her from running around. He said we probably need to go and he is right.

I have had to keep her from running some today and I hate it. I love watching my kids run around. When Nathan was sick and didn't run for a year I realized how wonderful it is. I hate to tell her not to. I am afraid she will lose that impulse.

So - that's the word.

Please pray for no more complications for Julia.

Susan

I can't believe that both of our children have now developed rare childhood illnesses.

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