aspiedel,

Ahhh, worry. My constant companion. I honestly don't know what my brain would do all day if I did not worry. :-)

As for your current worry, both our cancer kids have had slightly swollen glands in their neck throughout treatment and LTM. We have about 1 year left of LTM. Usually these same glands--for them they are usually in their neck right up high under their jaw, and it happens when they are fighting a cold or whatever and they can stick around for a few days after they are better. Does Aiden have a runny nose or cough?

When Seth was dx, he had the whole host of symptoms -- bruising, nose bleeds, unexplained fever, aches in his joints, etc. Micah, on the other hand, was just a bit pale with large glands in his neck and in the all around his collar bone, etc. He also had a swollen spleen, which I have no idea what that looks like/feels like, but that is a classic symptom.

This past summer, Micah went off meds for 2 weeks when his counts were low. His wbc went really high after that (like 10,000 or 10.1), but his white cells were like 85 or 90% neutrophils. He never really came down with anything, but the high neuts were what was making his wbc high, not blasts or even lymphocytes. The rest of his counts were normal and he went right back to a "regular" wbc a couple weeks later. So even a high wbc doesn't mean relapse. I have always heard that a replapse will show up in the counts -- I always took that to mean high wbc, probably with blasts, but not always, and low plts and red cells. Wouldn't it be great if someone invented a tester like diabetics use that we could do a cbc from home! :-)

You mentioned a rash...is it red and almost pimply around Aiden's mouth/nose? That is what my guys have and I remember they had it last winter, too. It went away during the summer. I am thinking dry cold air and lack of suntan is what is going on, but I was planning to ask about this at our next visit. Anyone else have this? I have heard that steroids can cause acne, even in the youngest kids.

Aspiedel, hang in there. I worry myself sick just about once a week. I take a tylenol pm before bed so that I can get some rest. And I visit this site. Right now, both Micah and Seth seem pale to me. Then I started comparing their skin to our healthy kids skin and they look the same. Just no sun shine for so long. We live in MN and are in a long spell of rain and clouds and even snow. I looked around church this morning and the only people with a healthy glow are the men who work outdoors all the time. :-)

Best wishes,

doublewishmom

My boys are not on steroids right now either. They start again on Wednesday, so we are at the same point in the month...hmm....I will definitely ask our onc about this. Maybe it is something 6mp or mtx can cause, since that is what they take all the time. I should go back and find those info sheets on all the drugs they get and see what the 6mp and mtx sheet says.

Aspiedel,

How did your clinic visit go on Tuesday?  Well, I hope. We had ours on Wednesday and we talked with the onc about the rash/dry skin stuff going on with the boys' faces. He didn't really know what could be causing it. He suggested waiting until we were done with the steroid pulse and then using hydrocortinzone cream for a couple days just to see if that helped. Since the Eucerin was not doing much. But, we are 4 days done with dex and the rash is about gone. How is Aiden?