We've had a rough week. When Dayssi received her monthly vincristine last Monday, some of the medicine leaked out of her vein and gave her a serious chemical burn on the top of her hand. This is a rare but not surprising complication; the nurses go to great lengths to make sure the catheter is in the vein, and the vein is in tact, to avoid this problem. We believe it was a tiny leak -- probably the needle knicked the vein but stayed inside -- so very fortunately only a little leaked out. Judging from the damage it did, and knowing what we now know about what can happen when these vessicants leak out of the vein, we know we are incredibly lucky. The injury could have been devestating. These chemicals are designed to kill cancer cells, and when they leak out of a vein they kill everything they touch, potentially including nerves, muscles, vasculature and bones, none of which can regenerate.
Sorry for the drama -- we do not appear to have had this extensive an injury. My only excuse for providing this information is to justify how freaked out I am about this complication, which is not life threatening (although it has been INCREDIBLY painful), but which has shaken my confidence in the ability of the medical experts, and in myself, to protect Dayssi from devestating unintended consequences of her treatment in general.
I am angry at the nurses who, despite the fact that they administer this drug to kids every day, let this happen to Dayssi on Monday. My anger is compounded by the fact that this accident happened against the back drop of escalating errors and incompetencies in our clinic, which make it hard for me to see this as just bad luck, and even more by the fact that almost everyone in our clinic has been in CYA mode with me, trying to minimize the negative consequences of the mistakes they have been making, and who have persisted in believing that there were no signs that this was happening when, as I remind them every day, there was no blood return from the vein and Dayssi complained of pain when the chemo was introduced. This was an error, not an accident. No one has apologized. And what's worse, I don't know how to orient myself psychologically to see Dayssi through another 7 administrations of this drug at the hands of the same people (who are, to their credit, showing immense concern and trying to help minimize any further complications of this injury).
Practically speaking, that is not entirely true. I have already insisted that a vascular specialist be brought in to start Dayssi's IVs from now on; the clinic has agreed. I have already decided also to require only one of two extremely experienced nurses (neither of whom is supposed to be doing this anymore) administer the chemo. But emotionally speaking, I am stuck between a rock and a hard place. Dayssi needs this chemo to produce the outcome we are hoping for -- at least this is what they tell me. But I can barely muster the will to take her by the hand and lead her into this clinic, to hold her down while they poke her, to leave her alone in the operating room while someone I don't get to see administers intrathecal chemo. And I don't know what to do about that.
