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 15, 2004

Saturday, May 15, 2004 7:45 AM CDT

Happy Saturday!

Let me catch up here....

Thursday morning we went to get Nathan's hearing aides. He liked them immediately and wants to be wearing them. We have noticed subtle differences in his hearing. We went to a restaurant for breakfast and when we got out of the car, it dings when the keys are removed and he heard that for the first time. He does seem to have an easier time understanding us - but it is subtle. I will try to post a picture soon of him and his aides.

Our next outing was to the dentist. We had gone to toys r us beforehand and he picked out a small toy that he knew he would get if he was good and did everything the dentist told him. So I told the dentist to go ahead and take xrays and Nathan did very well (last time we had to hold him down). The xrays found that he had lots and lots of cavities between his teeth as well. Basically all his teeth except his four front top and four front bottom are very decayed. So...he needs crowns on all his teeth except those 8. For his four canine teeth we are deciding if we would rather they use fillings for cosmetic reasons. They will not last as long but would look a lot better than silver canines. Since there is so much work to be done he will be put under general anesthesia at the hospital to have the work done. It is tentatively scheduled for June 24.

Friday morning I took Nathan to the preschool assessment. Basically they feel he is right on track on most things and advanced on things like language. They think it would be a good thing for him to go to the school district preschool since they have all the specialists to keep an eye on him. I have an application in for a state funded preschool slot at the district and we should find out soon if he gets one. If not we will probably just pay and send him there anyway. I was not surprised at the outcome because in the three weeks since his home visit he has made huge strides in his abilities. He has started to dress and undress himself and try lots of other things.

There were two teachers of the deaf there and so I talked with them about his hearing aides and the necessity of them. Some children with similar hearing loss do not get them. They felt like they will definitely benefit him because even though he produces the sounds he was not hearing without the aides (s, th, f) he was not hearing them anymore and he might regress. Also, since he was perfectly happy to wear them they thought he should definitely keep them. He tells us he hears better with them. It is hard to tell if he is saying that because we told him they would do that. His hearing aides came with a device that lets us listen through them and so I did that last night while they were having a bath. It was interesting because I heard all the little drips very distinctly and my esses I could hear quite sharply. These hearing aides are programmed to amplify the high frequencies he is missing and leave the low frequencies unamplified. He will go back on Monday to check on them.

Julia had a fever all day yesterday. So far Nathan hasn't gotten it and Julia feels better today. She clearly relished being the sick one. She knows that being sick gets attention around here. We can't blame her.

Today we will just lay low and try to recover from a long 2 weeks. Luke has been working non-stop (literally) for that time and has now completed the task and is wiped out.

Nathan will go to the oncologist on Monday for a check up. Tuesday we are off to Hilton Head. We can't wait!

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