Nathan's Journey: May 2004

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.

Saturday, May 29, 2004 8:22 AM CDT

Good Morning

We made it home fine. Our second flight was an hour and a half of continuous turbulance. I don't do so well with that. Julia was also miserable. Nathan thought he was on an hour and a half roller coaster and was even saying "whee!" at the particularily big bumps. He thought it was the most fun he's had on an airplane. I forgot to write that before we left on vacation he and I went to the local little amusement park. He had so much fun. He wanted to ride everything and was afraid of nothing. We finally had to leave after he made me ride the tilt o whirl twice. He loves speed!

Anyway - we made it home and a little while later our friends Brian and Lori arrived and we have been having a good time hanging out with them.

Nathan went to the audiologist yesterday. She adjusted his hearing aides a little and tested him. She is very pleased with the tones he is hearing and also that he likes his hearing aides so much.

He went to the oncologist afterwards and his blood counts are back up to almost normal. His weight was WAY up. It was his highest weight ever at 36.5 pounds. He was at 30 pounds only a few months ago.

We are done with doctors until next Thursday when he will be having a bone marrow aspiration. On Friday he will have a cat scan and an MIBG scan. We leave for New York on Wednesday. That is WAY too soon in my opinion! Luke, Julia and Luke's parents will all arrive on June 11. Luke will work fron New York and his parents will take care of Julia. We will all celebrate Nathan's 4th birthday together while we are in New York. This is the main reason for having everyone come to New York for a week this time. His birthday is June 16. We will all go home on June 19. So it will be a long 17 days away from home for Nathan and I. I can't wait to get it over and done with. Now that he is feeling so good it will be interesting to see how he does in New York.

I put a few pictures in the photo album and I plan to have our family web page updated in the next few days.

Have a good Memorial Day weekend!

Wednesday, May 26, 2004 7:09 AM CDT

Hello...

We are continuing to have a wonderful vacation. There has been lots more swimming and biking and playing. Luke and I got to have a nice dinner out together eating fresh seafood outside by the marsh. We have also been going out after the kids are in bed - last night we played miniature golf.

Nathan's health is fine. His blood counts were a little improved over the previous time. Since that was the case we are not drawing his blood again here since he has a clinic appointment on Friday. The SPF swimsuit and very large bandages have been working really well for his swimming and his broviak is not at all worse for the wear and neither kid has had a hint of sunburn.

We are really considering having his broviak removed on June 24th when he is under anesthesia for his dental work. After a year it would be nice to stop the daily care and have Nathan go to preschool without it. The thought is always there about relapse and it would be nice to have a broviak-free period if that were to happen.

Someone important to our family is undergoing a surgery today - while we don't want to say anything more we ask those of you who pray for Nathan to pray for her safety and recovery.

~~I have not been able to get the pictures off the camera so when we get home I will put some up~~. We've got some good ones!