Monthly Archives: August 2006


I can’t believe I have shingles! Can I please catch a break?

Dilemma resolution

I didn’t go. Nathan went to the clinic and got his counts checked late this afternoon and his hemoglobin was 6.4. It should be above 12 so it was very low. He is going to Denver tomorrow and so can’t have one then. So he and I went off to the hospital to get some blood. Luke came around 5:00 and I could have run to the school but I had Lauren who needed feeding. I also remembered there is a back to school night in a few weeks for the parents to meet with the teacher and the teacher will talk about the curriculum so I think I will just attend that. I still need to run over to the school and view the class list.

You guys had some good suggestions and I think I will try to meet with his teacher privately as well.


So – I have been trying to not let this blog be dominted by Nathan’s situation – but I guess the reality is that my life is dominated by it and so I have no choice.

School starts next Monday. Nathan will not be going. He will be getting a homebound tutor 5 hours a week. It is our intention that he go to school whenever he is able. It is unfortunate that he cannot at least start school with his class so he can feel a part of it.

Tomorrow night is an ice cream social and meet the teacher night. The first graders are meeting in the classroom and I assume will be oriented about full-day school. I think it would be good if I was there. I think it would also be good if Nathan could go.

Here is the dilemma. Let’s say Nathan was physically able to go. He should probably wear a mask. He may not be able to walk well – I might have to push him in a stroller. My god – would it be more harmful for him to go meet his classmates in that state? He is looking like hell right now. For him that is not the usual bald and skinny it is also the deathly pale/grayish pallor. The kids will probably be freaked out by him.

It is likely he won’t be up to going anyway so it will all be moot. I guess I will go…I hope I can keep from getting teary – it will be terribly depressing to be there without Nate. So – maybe I won’t go at all. I would like to meet his teacer though….

Methylene Blue

So – over the years Nathan has had all sorts of medications. He is currently getting the weirdest one – methylene blue. He is getting the chemo ifosfamide and it can can neuro-toxicity as described here: Ifosfamide is an alkylating agent with well-demonstrated efficacy against a large number of malignant diseases. With cyclophosphamide it shares a toxicity profile characterized by myelosuppression and urotoxicity, but ifosfamide has additionally disclosed adverse neurological effects. Ifosfamide-related central nervous system toxicity is characterized by metabolic encephalopathy of varying severity. Symptoms have been reported in 5-30% of all patients treated with ifosfamide. Copyright © 2003 S. Karger AG, Basel

They have found that treating with methylene blue can prevent the toxicity.

So – you can see from the picture that it is very dark blue. It is the color of the bottle. It was bizarre to see it pushed through Nathan’s IV. He is now proudly peeing blue. It isn’t just bluish – it is bright blue. His other bodily fluids are also blue. He has had each of us take a look at his blue pee – I am glad he gets a kick out of it at least.

Save as Draft…

…seems to be as close as I have gotten to posting any entries lately. With my current state of mind I just don’t have what it takes I guess.

I have been up since before 4:00 this morning because Nathan needed his sheets changed. He is on 60ml of IV fluids per hour and so that is a challenge. As usual at that hour – once awake I was up for the day.

So – I shall hit the Publish Post button this time and submit a boring post just for the sake of posting.