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.

Sunday, February 27, 2005

Sunday, February 27, 2005 5:27 PM CST

Wow - this week had flown by - I can't believe so much time has gone by since I updated.

Let's see - when we last left off Luke and I were going off on a date night. We had a very nice time and the kids were very excited for Brenna to come babysit them! It is so nice that they think it is fun and don't mind us going. They will be having lots of babysitting in the next few weeks for my choir practices while Luke is out of town. He has a knack of travelling during the busiest times of choir. Not that he has any control over it. Speaking of choir - I just cannot express how much I love it. It brings me such joy - and those who know me know that I am not a "joyful" person - so it is a wonderful thing!

This past week the kids started their new round of swimming lessons. Julia likes the teacher better and has told me that she is going to go underwater with the new teacher. I might try to take some pictures tomorrow. February had gone so fast that I don't think I have any pictures to put on the February page.

Hmm - I am trying to remember what else we were up to..... We had another playgroup at the place that has big inflatable jumping toys. They loved that again. Friday they had some friends over for most of the day and it was nice enough to play outside some.

Yesterday we took the kids to the movie theater for the first time. Yes - can you believe we had not ever done that? We went to the dollar theater and saw "The Polar Express". It was really fun and Julia lasted through the whole thing. I have to admit I did tear up a little as we sat there as a family. It was just so precious to me to be having this normal family exprerience and watch the kids enjoying this "first".

I have been procrastinating making Nathan a clinic appointment. I am just enjoying the medical-free life so much. I WILL call this week and make one for this week or next. They will probably take a urine sample and do the test on the urine that detects Neuroblastoma. They may take some blood, but mostly just a check up. I actually need to find out how tall Nathan is so I can figure out which rides he can go on at Disney World.

I have heard some sad news lately in teh childhood cancer world. I heard of a boy 4 years NED who just relapsed with Neuroblastoma and a mom on a childhood cancer online board lost her son suddenly, after 6 years in remission - do to a very late complication of his surgery. It is a reminder that anything can happen. I just wasn't aware of these thing happening in this world and now that I am - I see they happen far too often. It is such a helpless feeling.

I recently had a conversation with the teachers of the deaf in Nathan's school district. They met with him and said he is doing great. I have since become concerned as we try to teach him phonics in an everyday way. We try to tell him what letter or sound a word starts with and it is so very difficult for him to hear the subtle differences. Even when he is wearing his hearing aides we will repeat and finalyl tell him to look at us and then - whe he reads our lips he finally gets it. He doesn't currently have an IEP, but I think he needs one so he gets one on one help next year on his phonics and reading. I will be contacting the teachers of the deaf again to discuss it with them.

Well - that is about all I can think of that has been running through my head lately. Since we are just doing normal things lately - there doesn't seem to be too much to tell you all. I always find it interesting to check in on our caringbridge friends - even when it is hearing about their everyday stuff so I hope the same holds true for all of you.




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