Too good to last.

And so, it's been a nice run.

My son is sick again. :( It's been a good fight for on/off six months. I'll never concede, EVER! But today I began to admit it to myself. Which completely pisses me off in every way. I don't have the biopsy confirmation yet, but if there are no eosinophils in his digestive system it will further support my contention that he has some sort of autoimmune issue concurrent to his eosinophilic gastroenteritis- or EGE is more than what they think it is.

He did have 18 months of good times of pretty much no illness.
Chronic diseases are just that-
Chronic.

He's been vomiting on and off for a while, complains of pain, has pica (eating nonfoods), and the telltale blackened circles under his eyes are back. To top it off, one of my crowning bragging points in my son is that he's never lost too much weight when he's gone through vomiting spells. Not this time. He's 7, and down about 5-7lbs now. And we've noticed it.

Better days early this past summer.




So now we pack up and trek off to his doctor, 1100 miles away for information I probably already know.

Worse still! He's been on steroids for 4.5 years now and if he comes off of them then he'll start methatrexate (chemo drug) or 6mp (another chemo drug) depending on severity and what they find.

I'm REAAAAAAALLY not looking forward to this trip.

If they find something, we're screwed.
If they find nothing, we're still screwed.

To think I actually have days where I get burned out on trying to explain this disease to people? Honestly, I don't know if I'm burned out or actually more frustrated that we're not much better of than we were six years ago. Okay, I admit it we're better off than 6, but not better than 5 years ago.

No food. On steroids. No new answers, no new treatments. Just more worry that at any moment the side effects will kick in. Goody. The reality is, with steroids one is ALWAYS on borrowed time. It's no exaggeration. I know people who've had it all happen within 5 months- growth issues, severe bone loss, vision problems and moonface/body. Others, like us float around happily oblivious to the side effects till they bitch-slap you with a reminder that corticosteroids are not intended for long-term use.

I know I'm whining. But I get a day (today)- the day after he pretty much fell asleep (read: passed out) immediately after throwing up 10x (literally) a full 6 hours worth of feedings. About 600-700 ml's of fluid, aka 600-700 calories and just shy of 50% of his necessary intake for a day.

Tomorrow I will pull myself together for the good ol time I'll have next week subjecting my son to his 16th endoscopy and 12th colonoscopy complete with the rockin' good time we have doing a cleanout. He's 7. He doesn't deserve this- I can't stop it, nor can I fix it. What kind of shit is that? I'm his mom! He crawls into my lap, puts my hand on his stomach and says it hurts. All I can do is reassure him that we love him and are here to love him as best we can.

He knows I can't fix it, but it doesn't make it any easier as a parent.
And it never will.