Happy Remission Anniversary

Today is the one year anniversary of Dayssi's remission. I don't know what else to say. I want to feel like celebrating but today I'm not quite there.

Maybe it is because we were in the ER last Friday with a fever. They saw "traces" of "the start of" a urinary tract infection so that is what we're treating, with antibiotics 4 times per day for 10 days. She also had a cold and a cough though, and I suspect the infection was viral. I hate that they give her antibiotics when there is no clear bacterial infection. I think of all the times we've been to the ER, only once was there clearly an infection. But we've left with a prescription for antibiotics almost every time. What is going to happen when she gets a real, bad bacterial infection, and the antibiotics don't work?

Maybe it is because we had another horrible day at the hospital on Monday, with lost orders, lost (and then found, luckily) samples and other incompetencies. I finally pitched a little fit and I must have sounded really annoyed because all kinds of people came out of the woodwork to "address my concerns." The managing nurse in the oncology clinic was great -- she was very disturbed by what I told her and she thanked me for telling them on behalf of all of the parents at that clinic who can't speak English and don't know that they are entitled to better care. We have devised a plan to deal with the lab orders (she is going to give me the order slips ahead of time and I'll bring them to the lab myself). She is going to walk us through Dayssi's chemo next Monday to make sure the correct order is submitted and filled, before anything is put into her body. The hospital "customer relations" lady was also very nice, and she gave us a gift certificate for the gift shop, which was very nice but truly misses the point. Did I mention that I had to ask twice, and wait an additional 45 minutes just to talk to the managing nurse and customer relations lady?

Maybe it is because there are kids relapsing on the ALL email list, all of the time, some after many years in remission. It is so unfair. And it is so frightening. I am so tired of worrying and I wonder if I'll ever feel safe. I called Dayssi's oncologist today and asked him to review all of her chest xrays from the various ER visits (UPDATE: HE CALLED ME, EVERYTHING LOOKS FINE TO HIM). Every time we go in they hear a little something, and they see a little something, on her left lung, but then decide it is nothing. She has been treated twice for pneumonia, once in-patient. On Friday, they saw and heard the same little something, but after showing the xray to the radiologist, decided it was nothing. I asked the ER doctor on Friday what it could be, if not pneumonia, and she said it is probably a natural variation in the lung, but that if it starts to change we'll do a CAT scan or MRI. If there are different doctors looking at her xrays every time we go into the ER, who is going to notice if it changes? Maybe her oncologist has already seen all of the slides and reports from the ER, and maybe he has looked at them together. But I'm not taking anything for granted these days.

Tomorrow is India's last day of kindergarten! We're going to do a joint celebration of remission anniversary, and last day of school, tomorrow. With any luck I'll be more up for it.