and so it goes........
ROAR! no. FUCK!!!!
nope.
DAMMMMMMMMMIT!
nope.
No human word conveys this level of frustration.
Confirmation only lacking the true biopsy results, yes, the boy is sick. He's also bit, by bit, falling off the growth chart... a different set of complications follow that newest development. The ostrich in me is definitely ready to bury my head in the sand. NO such ability to actually do it- but entertaining the idea till Wednesday or Thursday seems like fun till I REALLY get to make some more hard decisions.
4.5 years of steroids is about 4 too long for continuous use.
Now we (meaning the docs) want to go to methotrexate. Methotrexate is used for a variety of illnesses and is essentially a chemo drug. It keeps cells from replicating while quieting the immune system. Side effects can be waaaay nastier than steroids but are not guaranteed to occur. Steroid side effects are essentially always a matter of time. We've been on borrowed time for the entire time.
Everything is always pending biopsy results. But, the pictures support enough to know his disease is back. Even in his esophagus. A place it has not been in a good 3 to 4 years.
I know only about 3 people read this- but I'm venting. So forgive me.
THis sucks.
I work my fucking ass off for other patients, I tell them what I already know about what's up with my kid. We really lack treatment options and they really suck as it is. Anyone reading this who happens across a philanthropist, give em my number okay? SO much to do, and too many being diagnosed with almost zero support. Great odds for those like us.
I know- it can be worse. He's not dying. THat IS a huge comfort, but suffering is suffering. Said that before I know. Hug those who are healthy today. Enjoy the moment that they ARE healthy. I had about 18 months of him being fairly well, I'd kill for one more day of it. :(
Get him back to baseline, try new med, pray he's got mild side effects, and STAY at work to find some new treatments. Cuz this just is getting old.
nope.
DAMMMMMMMMMIT!
nope.
No human word conveys this level of frustration.
Confirmation only lacking the true biopsy results, yes, the boy is sick. He's also bit, by bit, falling off the growth chart... a different set of complications follow that newest development. The ostrich in me is definitely ready to bury my head in the sand. NO such ability to actually do it- but entertaining the idea till Wednesday or Thursday seems like fun till I REALLY get to make some more hard decisions.
4.5 years of steroids is about 4 too long for continuous use.
Now we (meaning the docs) want to go to methotrexate. Methotrexate is used for a variety of illnesses and is essentially a chemo drug. It keeps cells from replicating while quieting the immune system. Side effects can be waaaay nastier than steroids but are not guaranteed to occur. Steroid side effects are essentially always a matter of time. We've been on borrowed time for the entire time.
Everything is always pending biopsy results. But, the pictures support enough to know his disease is back. Even in his esophagus. A place it has not been in a good 3 to 4 years.
I know only about 3 people read this- but I'm venting. So forgive me.
THis sucks.
I work my fucking ass off for other patients, I tell them what I already know about what's up with my kid. We really lack treatment options and they really suck as it is. Anyone reading this who happens across a philanthropist, give em my number okay? SO much to do, and too many being diagnosed with almost zero support. Great odds for those like us.
I know- it can be worse. He's not dying. THat IS a huge comfort, but suffering is suffering. Said that before I know. Hug those who are healthy today. Enjoy the moment that they ARE healthy. I had about 18 months of him being fairly well, I'd kill for one more day of it. :(
Get him back to baseline, try new med, pray he's got mild side effects, and STAY at work to find some new treatments. Cuz this just is getting old.
posted by Virtuous Vituperator at
3:38 PM
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