Sometimes I do not really know how we are surviving this. It is a day-by-day thing. We just get through it. We wait for this phase to be over and try not to think too much about the next phase, which is potentially even worse. Please keep us in your hearts. Nico really needs a break.
If you have kept up with all the posts, you might recall an entry Jeff wrote a month ago about an anaphylactic reaction Nico had after receiving blood products and a type of chemotherapy called PEG. We had a real issue with the whole sequence of events because no one could be sure whether Nico had reacted to the blood (which he had reacted to in the past) or to the PEG. This was especially concerning because he was scheduled to receive PEG multiple times and if he was allergic to PEG, his next exposure would result in a more severe reaction. And trust me, the first reaction was severe enough. So we got our answer today. Nico had an anaphylactic reaction to PEG, and indeed the reaction was worse. So here we all sit in the ICU. Nico appears to have recovered better than Jeff or I, but that is par for the course. This time was hard on him though. When we got to the ICU and he realized that we were not going to go home, Nico became completely hysterical. He was screaming “take across street to car… take car home” repeatedly. It was heartbreaking. But the most heartbreaking part for me is that because Nico is allergic to PEG, and cannot receive the three remaining doses due, he will have to instead receive Erwinia. For every one dose of PEG missed, Nico must get six doses of Erwinia and the Erwinia can only be administered as an intramuscular shot (in the thigh). It is just one more thing.
Sometimes I do not really know how we are surviving this. It is a day-by-day thing. We just get through it. We wait for this phase to be over and try not to think too much about the next phase, which is potentially even worse. Please keep us in your hearts. Nico really needs a break.
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