Posts made in April, 2012

Home again, home again. It’s been a long week. Ethan is in excellent spirits despite all his counts being low and having to take antihistamines around the clock. Here are my “take home” lessons (har, har): It Isn’t Always Gratifying When You Are Right A month ago Ethan had a reaction to PEG-asparaginase: nausea, vomiting and fever that we stayed a night in the hospital for. We were told repeatedly that it was not a reaction to PEG. The doctors told me (and my mom) point blank that those were not PEG side effects despite a plethora of documentation that says they are. Our discharge paperwork from that stay said “unidentified gastrointestinal virus”, meaning they wanted to blame it on a virus despite the fact that none of his...

I thought I understood the meaning of fear. I have a whole new level of understanding now. Today Ethan had an anaphylactic reaction to PEG asparaginase. This was his third dose. Exactly one month ago we were in the hospital for a night with vomiting diarrhea and fever after receiving his second PEG dose. Those were normal side effects but today was a true allergic reaction. Risk of allergy increases with each subsequent dose of this drug. About 5 minutes after starting the PEG today Ethan complained of an itchy bottom and ears. He was very agitated and red in the face. The nurse immediately turned off the IV. I scooped him onto my lap and noticed he was getting a bump rash on his cheeks and his lips were puffy. It was about then I knew this was going to be bad....