Nathan

I guess it is time for a more journal type of entry.

I just updated Nathan's caringbridge site with all things medical. So you might want to read that first.

So anyway - it was hard seeing him feel so bad today. He has actually felt so good these past 7 months since relapse we can pretty easily shift our focus away from his battle. I have been feeling some angst lately about his disease. There have been several relapses of other neuroblastoma kids and a few others having progression. In particular there have been a few who relapsed and got back into remission again only to relapse again recently. Since we stand at second remission with Nathan right now and knowing that chances of him NOT relapsing are very, very low it is disheartening seeing the evidence of that being true. I "know" these kids through the Neuroblastoma listserv on ACOR. Some of them I have met in person.

We have been waiting for a vaccine trial to open for Nathan. When he had his surgery in August we were told - "have him do 2 rounds of chemo and then come back for the trial in 6 weeks". After six weeks the trial still ahd not opened and we were told it would be another 6 weeks. Then we were told almost certainly the end of January and the latest is sometime in March. Meanwhile he has been doing rounds if chemo that are not very well tolerated by his bone marrow. If his disease comes back he will not be eligible for this trial (though he will suddenly be eligible for a zillion others). The hold up is FDA approval - so we don't blame the institution - we just wish it would hurry up at get approved. Nathan is eligible for so few trials since he has no measurable disease. That is FINE with us - but we know he still needs treatment and so this vaccine trial is ideal since it is not a chemo. I just keep thinking that it will keep being delayed and then he will relapse and we will always wonder if he had just gotten to do the vaccine trial maybe that would have been the thing that could have saved his life. Ughh.

Then - there are the set of non-life-threating problems I mentioned in his caringbridge site. A runny nose and chronic diarrhea/loose stools. I do believe we have now tried every single allergy medicine out there for his runny nose to no avail. His upper lip is always coated with snot. No matter how often his wipes or blows - there it is. It has been this way since he started chemo in April 2003.

Who knows about the loose stools. They have been a problem since his second surgery in November 2003. They are such an annoyance to him and they have contributed to him being skinnier than he should. I think he compensates by eating. He eats more than an adult does.

Anyway - Of all these things - the trial opening ASAP is top on my list. I can't explain how crazy it makes me that his life may be riding on this and there is nothing to do but wait.

Well - I have ignored Lauren long enough and her babbling is starting to sound a little fussy - so I will wrap this up - but I could go on and on....