I never thought I would be sitting down to write this, but I am jaw-droppingly shocked at what we found out today.
This morning our rounding doctor, Dr. Andersson, came to see us and we had a short list of questions prepared for him. Most of them centered around Ann's daily blood test. Why was one number a little high? What did he think was causing it? The kind of thing that doctors probably sleep walk through, most of the time. Not because they don't take the questions seriously but, because they are probably pretty easy to answer. However, he really was a very nice man and seemed genuinely interested in answering our questions.
Almost as he was leaving he made an innocent comment that completely altered the entire trajectory of the day. I'll paraphrase how it happened.
"So you are going to be finished with chemo tomorrow", he said to Ann.
"What do you mean?" I piped in. "We have three days of ATG coming up."
"No. Your orders are for only for busulfan and fludarabine. There is no call for ATG in your orders."
Ann and I disagreed with him and that lead him to call the charge nurse and ask her to pull Ann's chart and orders. We both looked over the documents and found the orders and schedule that Ann had signed in clinic with Dr. Kebriaei Thursday when she consented to the treatment plan. Those called for three days of busulfan and fludarabine and three days of Rabbit-ATG then the transplant. Ann's signature was there as was the doctor's, just like the copy we had been given and I had filed at the apartment.
The only difference was that on this copy the Rabbit-ATG had been crossed out and the word "error" had been added. I asked Dr. Andersson why the ATG had been omitted and he was at a loss. I could tell from the color of his face and the way he casted about trying to answer me he was embarrassed.
Presumably Dr. Kebriaei had made this change for a good reason, and I want to give her the benefit of the doubt. But omitting us in the decision making process is bordering on the inexcusable. Because this is probably Ann's final shot at beating this we argued very vociferously for the strongest chemo regime that Ann could tolerate. A reduction in the amount of chemo would see to make it less likely, not more, that this transplant will be a success.
I have to ask myself what the point of us signing our consent was?
I should add that Dr. Andersson promised he would find out what ws going on and have answers for us in the morning.