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, April 28, 2003

Monday, April 28, 2003 10:04 AM CDT
Luke here...
As predicted, nothing much to report. We have had a very good weekend. This was a three day weekend for us as we had no clinic or hospital visits on Friday. Nathan has been in great spirits, eating well, playing some, engaged, etc, etc. It really is marvelous. He is feeling and acting better than he has since before his diagnosis. It is a little bittersweet knowing what kind of hard week we will have this week, but it is mostly heartening to know that he can feel well and be happy.
His Uncle Josh and Aunt Jae (my older brother and his wife from Albuquerque) are here now. They came in yesterday afternoon and will leave tomorrow morning. Combined with his feeling better and his apparent starving for social activity, he is having a ball with them. When they came in we all ended up on the floor talking and he just talked and talked and talked to them. It was great. And then miracle of all miracles he actually wore the backpack that carries his nutritional supplement and pump himself so he could walk around and show them things. Julia is very much enjoying the company as well. We really enjoy seeing the kids with family.
This week things will probably start to go downhill a little on our rollercoaster. Today Nathan goes in for his counts. It should be a quick visit. We are expecting the need for a red blood cell transfusion tomorrow. They will want his hemoglobin count up before the second course starts and we doubt his body has brought it up enough. We will be hoping his platelets are up too. He has to have those up pretty high and unsupported by transfusion before they will start the second course of chemo. If all goes well, the second round of chemo will start Wednesday. So, our week will look like this:
Monday: Quick trip to clinic for counts and exam
Tuesday: Probable RBC transfusion (3 to 4 hours in clinic)
Wednesday: Bone marrow aspiration followed by full day of chemo
Thursday: Full day of chemo
Friday: Full day of chemo
After that we start the waiting game again waiting for him to crash from the chemo, trying to get him through his neutropenic period without hospitalization, etc, etc.
I hope you all had a good weekend.

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