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.

Tuesday, March 2, 2004

Tuesday, March 2, 2004 4:30 PM CST

Well - the CT scan went OK. I got him up early and he had breakfast. Afterwards I mixed the scan contrast with ginger ale. He didn't mind the taste but was intimidated by the amount and so I have it to him by syringe full over about a half and hour. We went to the clinic and he was weighed and then downstairs for the CT scan. After waiting a few minutes the tech came over and told me he would be having just his head and orbits (eye bones) scanned. I told her that he had already had oral contrast and since he had had an abdominal tumor I was certain they wanted that scanned too. After about 45 minutes they got the appropriate orders written up and he finally had his scan. All the waiting was hard on him. He did really well for the scan.

We went right up for antibodies and all was going well until shortly before his pain came when he wanted to sit up (which is not normal) and he was very angry that his TV didn't reach when his bed was up all the way. He really lost control over it screaming at me and trying to hit me. Then his pain came and he once again screamed at me to help him and every little thing I tried just made him madder. During all this they took his blood pressure which was very very low and so they had to give him lots of fluids. I finally had to leave the room because I couldn't take his yelling and fussing at me. The nurses were so surprised to see him act that way because it just isn't normal for him. He is either so very fed up with it all or having some kind of reaction to some drug. Most likely it is emotional.

We came back to the room and he slept for a while and then we went downstairs where they had coffee and cookies. After that we went to have his MIBG injection. When we got there we realized he hadn't had a medication he needs to protect his thyroid so we had to go back up to the clinic and wait around for that. He got his injection and one of the other children was there practicing with the child life specialist for his scan tomorrow. She offered to practice with Nathan too. He didn't want to but we put a stuffed animal in the machine. She is going to come for his scan tomorrow to help. The techs seemed worried about him doing it without sedation. I really think it will be OK when it comes down to it.

Nathan is now watching a movie and eating and in pretty good spirits. Tomorrow will be another trying day. 3 more to go.....

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