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.

Friday, April 22, 2005

Friday, April 22, 2005 4:21 PM CDT

Well - I guess I will give all the details - it might get long though.

Friday morning at 7:30 a limo picked us up at the house and drove us to the airport in Denver. The kids were very excited to be in a limo. I was a little less happy because due to their car seats I had to ride backwards in the limo - which is not great for me with motion. Check in was a breeze because they booked us on Frontier airlines and Nathan and I both achieved frequent flyer status with them last year going back and forth to New York so we got to go the the front of the check-in line. They gave us 3 seats together and 1 apart. My wonderful husband offered to sit with the kids. They were amazingly good. They didn't make a peep. Watched TV, ate, colored and played with play-doh.

We arrived in Orlando without a hitch and were met by a representative from Give Kids the World. They took us to car rental and we signed a piece of paper and were on our way. We went to Give Kids the World (more on what that is in a moment) and checked in. We were all set to stay at the Animal Kingdom Lodge since GKTW (abbreviated) was booked up. Well- when we arrived they had a cancelation and gave us the choice of staying there. After some thought we took them up on and and are so glad we did. Give Kids the World is a resort for families going to Orlando for a wish trip. They have 96 2 bedroom villas for the families to stay in. They also have free meals, free ice cream parlor and lots of activities. There is a carousel, train, 2 pools, and multiple game rooms. It was perfect for Nathan and Julia. So, after we got there we partook of the activities and I went to orientation and got our tickets.

Saturday we went to Sea World and met our friends, Max and Mindy and their kids, Maxx and Miles there. They recently moved to Florida from Colorado Springs and so it was fun to get to hang out with them. We brought a stroller for Julia but let Nathan walk the whole time (more on THAT later). We saw two shows and played in a huge rope climbing area. They loved the shows and we got great seats due to Nathan's Give Kids the World button. We left around 3:00 and went back to GKTW. My parents arrived in town and came over and the kids got to show them all the amenities before we all went out for dinner.

Saturday night Nathan started to complain that his leg hurt. By Sunday morning he was in extreme pain and couldn't walk. It ws the same hip that he had the transient symovitis in. We were set to go to the Magic Kingdom, so with lots of tylenol and ibuprofen we went. We got a special card with a stamp that allowed us to use Nathan's stroller as if it were a wheelchair. This allowed us to take the stroller right up to the ride and transfer him. It was somewhat painful for him to be moved in and out of his stroller - but he beared with it in order to go on the rides. He actually got to ride on the "It's a Small World" ride in his stroller on a special boat. We rode on most every ride they have there. We didn't have to wait in any lines so we had plenty of time. Nathan adored the Thunder Mountain Railway and Goofy roller coasters. He and Julia both agreed that Dumbo and the Magic Carpet rides were the most fun also. There was much snacking and riding and then we parted ways with my parents. They were going to stay at the park and we went to dinner (Steak and Shake - my favorite!) and then to BED!

Monday we went to the Animal Kingdom for the morning. We enjoyed seeing the animals but didn't want to spend the whole day there. There is a ride that simulates a safari and there was a scenario about poachers. IT turns out Nathan was listening very closely and he was actually quite concerned about the "hunters" and it was very difficult to persuade him that it was all pretend. In the afternoon we went back to GKTW and went swimming. They had a BLAST and it was nice to take a break from the parks. Nathan was starting to walk on his leg a little by then. Sunday night we went to downtown Disney and had dinner at the Rainforest Cafe. Nathan and Julia loved the setting there and the fake thunderstorm and animatronics. It was a very nice dinner and once again we went home and went to bed!

Tuesday we went back to the Magic Kingdom. Nathan was walking much better and we had to force him to stay in the stroller to rest his hip. We went on all the favorite rides again and spent the whole day there once again. It was really nice to revisit what we had just done and I think the kids enjoyed the second day even more than the first. We went over to the Polynesian Hotel for dinner with thoughts of returning to the Magic Kingdom for fireworks, but we were all just way too tired for that and went back and went to bed.

Wednesday was our last day and we had a leisurely morning at GKTW while the kids played with all the activities there. We went out to lunch (Steak and Shake again!) and back to GKTW for ice cream and then back to the airport. Nathan was very happy to find out they would be showing the Incredibles on the plane and he sat and watch that without a word. Julia watched TV and was also very good and quiet. All was fine until about 45 minutes from landing when we were told that the Denver airport was closed due to weather. We circled for a while and then headed to denver. When we were almost there we were told it was closed again and had to land in Colorado Springs. It was a very bumpy ride down and I actually got sick. We were then told we would sit on the airplane in Colorado Springs until the Denver airport opened. No one was allowed to get off. Fortunately, Nathan and Julia mostly slept through all of this. So - we sat there for a few more hours and finally got to go to Denver. We caught our limo and got home around 1:00 am.

We spent Thursday recovering from all of this. Today it came to my attention that Nathan's leg was still bothering him somewhat so I took him to see the pediatrician. She talked to the oncologist and they decided to send him to an orthopedist on Monday. I am not really concerned about this being cancer considering what we just went through - but it does appear his hip has not healed and we need to make sure we know what is going on. We do like the orthopedist. She is the one who pushed for all the tests and diagnosed Nathan so quickly two years ago. Hopefully we will figure this out and move on. I will talk to the oncologist later today to hear his thoughts.

Meanwhile - Julia seems to be doing fine. She will have bloodwork done and an appointment with the cardiologist on Wednesday and we are crossing our fingers that her echo is normal and her labs are trending down to normal.

I have to admit - I am SO tired of all things medical. I am really hoping for resolution with both kids for at least a few weeks.

So - that's about it.....I will update later with more medical happenings when we know anything and I will post some pictures soon too.























































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