Okay... I don't think Dempsey can handle steroids anymore. This round he's ended up with "itching" between his fingers (neurological), there are no physical/ outward indications. He seems more bipolar-ish with his emotions. I can't tell how much of that is steroids vs being a 6 yr old boy! He is starting to say more and more unkind things and that IS NOT who he is!
I am not on great terms with his primary ONC. I want to reach out to an NP I like and who I've talked to before.
I am worn out like your favorite pair of sweat pants... where the waist cord is gone so you roll them... where the thigh part is thin because you've never had a gap there... where there are stains feom cooking woes, baby woes, PMS woes... you catch my drift?
I don't think I (or my family) can handle the steroids anymore! WHAT DO I DO?
The responses I got are varied. Most are comforting and helpful. Some, despite being holistic-minded are still quick to defend allopathic ways.
I added this to that thread just now...
Just got off the phone with an NP I like. Anyone else feel like they jUST DON'T HEAR YOU?? Explaining to them that my son's personality is different and it's affecting his quality of life and I get the response "well, steroid psychosis is a known side effect... and the steroids are such an important part of treatment for the cancer he has..." Seriously? I'm shaking, the adrenaline is too much. I feel like they don't care that my son is changing!! They just care about their studies and protocol... none of which I've actually seen, let alone read.
I can see why people up and leave the country and go into hiding!
I was also told that the itchiness is more a side effect of vincristine than the steroids... um, we've NEVER had a problem with vincristine (21 months in now) but the steroids are an issue AND itchiness IS A LISTED SIDE EFFECT OF PREDNISONE!!!!!!!
I truly feel like the medical "professionals", who have legal access to my child, don't listen to me. They don't have to live my child 24/7 and feel the effects of their precious protocol treatment. I just can't. This is all too much and my son is suffering in the name of "health". It makes NO SENSE. None. When we know there are natural ways to deal with this.