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, June 7, 2004

Monday, June 7, 2004 7:52 PM CDT

*** Tuesday Breaking News - MIBG SCAN IS NORMAL!!!! Good news. We were pretty nervous. No bone marrow results yet. ***

Hello - long day as expected...

The broviak removal went fine. Nathan was upset about being hungry. We snagged a donut when they put them out and saved it for him. I think that made him think more about it, but on the other hand if he had not had one when he was done it would have been worse. The surgeon was late in getting to the room and the anesthesiologist was about 3 minutes for leaving to go to another area for another patient. Fortunately the surgeon came in the nick of time. The anesthesiologist was the most recent of several people who have referred to Nathan as a "little man" on this visit. Everyone is very taken by him.

He quickly ate his donut after the procedure and then we saw the doctor who informed us only one of his scans was in so far - his Cat scan - which showed no evidence of disease. It did show that one of his kidneys does not appear to be working very well. Nathan will have a renal scan to further assess this next week. This is not big surprise as we were told that the surgery and the radiation were both liekly to cause kidney damage.

Tomorrow we will most likely have MIBG scan results and maybe bone marrow results too.

We went down to the cafeteria and had lunch and then not too much after that Nathan got a room and started treatment. His pain came early and hard. He really screamed this time. We gave him an extra dose of pain medication.

After treatment his oxygen just would not come up. We let him sleep it off a long time and finally moved the sensor from his toe to his finger where it promptly measured normal. We left around 5:00 and went back to the apartment. Nathan wanted me to massage him and I did so continuously for 2-3 hours. After a while his mouth hurt so I massaged his face too. I gave him some more narcotics finally and he perked right up. He then played with Joan for quite awhile and I finally had to force him to go to bed at 8:30.

We will be on the "late shift" this week and will not go to the hospital until around 10:30 each day. It is not my preference but I hope it will work out OK.

Well - now that Nathan is in bed I need to go relax. I will update again tomorrow.

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