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, October 3, 2003

Friday, October 3, 2003 9:37 PM CDT

Susan here...

Nathan had a good night Thursday night and slept pretty hard. Today he slept quite late and had to be awoken for the doctor's rounds. He still has a fever and they decided to suction some mucous from his nose and also do some cat scans to see if they could see any infections. They could not find the previous cat scans they needed from those sent to them and so the doctos in Colorado Springs got them burned on CD and my friend Tonya drove them up to Children's hospital for us (thank you Tonya!) and so they have those to compare to.

The nasal suction thing was unpleasant but quick. We had to hold him down. We had the usual fights over medicines and mouth care. We asked the child life specialist to come by and talk to us. She told us she basically felt we were doing everything we could but he was just 3 and that is how a 3 year old was going to react to something like that. Telling him it will help his mouth get better while we are causing immediate pain to him is just not going to get through to him. She told us how great all the nurses think we are doing. We have had several nurses tell us that. It is good to hear because it is so hard. Nathan's nurse he had today told us that most parents with kids Nathan's age only spend and hour or two at the hospital with the child. That is very hard to comprehend. I guess Luke and I do have it as together as possible. It is just the worst type of torture to repeatedly hold your child down and cause them pain.

Nathan had a good afternoon. After his cat scan they let him out of his room to take a bath. Technically he isn't allowed to do that since he is on isolation but all the kids there are also on isolation so there was no one for him to run into anyway. He was happy about going to take a bath and told us he wanted his slippers and was going to walk. That was really great to see. It had been at least a week since he had walked. He had lots of fun playing in his bath and then sat in the chair in his room and played more. We then put a mat down and let him play on the floor and he loved that too. He really was playing like he is feeling much better.

So medical state tonight is:

Still up and down fever

Still diarrhea

Culture of nose secretions negative

Blood cultures negative

ANC was 164 this morning but was once again dilute due to water retention so is hopefully actually highr than that.

Chest CT good except they could see extra fluid that indicated a need for a diuretic.

Sinus CT showed filled sinuses (this is the same as it has been for 6 months) however now that he is in transplant they will load him up with a different drug to try to kill any possible bugs sitting in there. There is no way of knowing if there is any infection in there without draining - which they don't want to do with his immune system down.

Platelets given this morning and probably will get them tomorrow morning too

I feel like I am missing something but cannot really write any more. We will update tomorrow.

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