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, February 11, 2004

Wednesday, February 11, 2004 8:02 AM CST

Good morning - Susan here...

**** a little addition since this morning -

click here for a little video of Nathan and Julia.

********

Well - I will try to recap the past 2 days since I have been remiss in writing.

Monday morning the kids and I went grocery shopping and then in the afternoon I took Nathan to his local oncologist. He weighed in at his lowest weight ever 30.2 lbs. He was 36 pounds at one point. He was happy to see his doctors and nurses there and was amusing everyone with all his tales of New York City.

Heathwise he is doing OK. His blood counts were fine. Not fine for a non-cancer person but fine for him! They gave him some Procrit to stimulate his hemoglobin so that he won't be quite so anemic.

We decided to put him on Megace. It is a steroid that stimulates the appetite. He is taking that in pill form at his request. We had a little difficulty getting the prescription in a large enough dose so that he would have to take 3 a day rather than 6. But after some dealings with store management it is taken care of.

He continues to do well on his Accutane. The only complaint he is having is dry eyes. I bought some eye drops for him but he didn't like the sensation of them.

His skin is not red and peeling (at least not yet).

I will draw his blood tomorrow and send it to NY for HAMA testing. If you recall, HAMA shows whether he has developed his own antibody to the antibody therapy. If he develops HAMA then we will have to wait for it to go away before we can do another round. However if he develops HAMA after he has had 4 rounds then he will be done with the treatment. He is about to start round 3. After round three if still negative he will be home for three weeks and go back for round 4. After round 4 if he is still negative he will begin going back every 8 weeks until negative or until 2 years have elapsed (measured from round 1).

Back to non-medical things - yesterday I took Nathan and Julia to Julia's day care provider. I did some projects around the house that were sorely needed and Luke and I went out to lunch together. They both had a good time there and it was nice for me to have some time to get things done.

Today it is snowing and so we will just hang around the house.

Nathan will go back to the Dr. on Monday for some blood tests. We should know next Tuesday or Wednesday if he has HAMA. Considering his pain levels last time it is unlikely he has developed it. Generally they stop having pain when they deveop HAMA.

I have a call in to Corporate Angel Network to try to find a flight. I am crossing my fingers that we can get one this time as flights are more booked up this time and there aren't any frequent flier seats available on the days we want to travel.

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