Pros and Cons of Summer in Northern California

On Monday the girls went with Kirsi to the ranch where she trains horses and got up close and personal. The had a great time. We aren't really horse people (not yet anyway) but we are surrounded by horse country, and it is such a treat that the girls could take a 45 minute drive and arrive at this real working ranch, where they helped feed the animals and sat on the horses (India got a ride but the manager said Dayssi is too small to ride -- you can see she enjoyed just sitting up there plenty).

After they returned I took Dayssi for her blood test (counts are good and high), and on our way home we saw some smoke up in the hills near our house. We got home and went upstairs to see if we could see a fire, and we couldn't, but it wasn't long before we heard fire engines zooming from all directions, coming up the road that used to be our driveway. Soon there were helicopters dumping water and fire planes spraying fire retardant and, although we still couldn't see flames, I started getting calls from neighbors across the street, whose houses are up on a hill, sounding panicky and offering to help us evacuate. "Can you see flames?" I asked. "The entire hillside is on fire and it looks like it is moving toward your house!!" One neighbor on our side of the street called to say that the firemen told her the fire was blowing past, but not toward our houses, and he told her she could stay put. But just in case I decided to put some valuables in the car and get us all out of there. It is an interesting exercise, trying to decide what you should take when you are leaving your house not knowing if it will be there when you return. I couldn't think very clearly, but ended up grabbing some important papers (I guess I was imagining being stuck in various government agencies for days on end trying to place birth certificates, marriage license, passports etc.), jewelry (huh? do i even wear any jewelry?), and finally, OH YEAH, I remembered I had to get Dayssi's medicines. As I walked into the kitchen to get them I looked out the kitchen window and saw a row of flames within meters. It seemed to be just on the far side of the hiking path behind our yard. So we moved pretty quickly then into our cars and got the heck out of there, driving past news vans, stopped cars, and hundreds of voyeurs standing right across from our driveway. Nice. It does not inspire confidence in the emergency notification system.

Maybe they knew we were ok. The fire basically flowed past our house like a river, across the foothills, and finally went out when it reached Page Mill Rd. Well, it mostly went out, because every night since Monday fire trucks have zoomed up our side road at least once to put out a tree that has burst into flames or something. We smelled smoke for a bit this morning actually. But there isn't too much left to burn up there, and clearly the fire folks are watching carefully. Phew.

In retrospect I'm sure I didn't grab the right stuff, but I'm glad we got out of there and that no one was hurt anywhere. India was pretty scared though, running around trying to figure out what to take of hers (her kindergarten papers! they can never be replaced! or her shoes, which she started loading into a paper bag). What a cutie. Apparently her friends on the hill who could actually see the fire were even more traumatized. Dayssi was oblivious.

Oh, and Jim was teaching while this was going on, and since he lost his cell phone on Sunday there was no way for me to reach him. I left a few messages on his office phone asking him what he wanted me to take out of the house for him, but he never got the messages, at least not until the fire was out. Apparently he walked in the house at 8pm and wondered why it was so smoky. The girls were there with Kirsi, but I was at my first acting class. Yes, you read that right. More on that another day.

Sorry I didn't get pictures of the fire -- it wasn't on my to-do list at the time.

Another Great Week

All is well. Dayssi started a new monthly chemo cycle this week, with Vincristine and steroids, but she is pounding through it with only minor complaints. India is enjoying theater camp. We had visitors for father's day and everyone enjoyed themselves. We've been going swimming, taking picnics to outdoor concerts, and I've found some extra time for yoga and hiking. It is a joy to see the girls having a regular full-of-fun summer. So, no worries at the moment.

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.

Good Snooze

All hell has broken loose at the hospital. They are building a new cancer center and the old clinic and lab have shut down, everyone has been moved to temporary spaces, and the staff are trying to adjust. For three weeks now we've dealt with little administrative glitches, nothing serious, just the kind of stuff that drives me crazy. You head to the hospital for a quick finger poke, and you can't get out of there for hours: no one put in the order for our blood test, the new nurses have given us orders with other kids' names on them (I guess I should read that stuff too but I try to get on automatic pilot in there), the new nurses don't seem very skilled at drawing blood from little kids, we don't recognize anyone and no one has any sympathy for us, the new clinic is in the children's hospital, but the lab is now in Stanford hospital, about a block and a half away, so when the labels are wrong I'm running back and forth, usually with Dayssi in tow. Argh.

Yesterday the chaos reached new heights. We arrived at noon. There was no order for the blood test. "Have you had labs done here before?" asked the nurse. "Every Monday for over a year," I said. A nurse called our doctor, who gave the order. Forty minutes later, someone gave us a label. A new, very nice nurse said, "I'll do it for you in here so you don't have to go to the lab." We stepped into the utility closet in the clinic, where the new nurse tried to use the finger poke apparatus. I should have known we were in trouble when she didn't start by warming Dayssi's fingers. She couldn't get the poker to work, because it had a safety lock that had to be removed (I pointed that out after a while). She poked, and squeezed the blood out, but didn't tip the bottle back and forth a hundred times like the experts do. We left with a false sense of completion. I dropped Dayssi at home, and about 10 minutes after I got into my office (1:30pm) they called me to bring Dayssi back. The blood had clotted and the tests couldn't be run. I asked Kirsi to meet me at the hospital with the girls at 3:30. We ran into the clinic and the nurses acted like they knew who we were, and that we had come back for another blood test. They handed me a label. I took it, with Kirsi, Dayssi and India, around the block to the other hospital. They called us in, looked at the label, and said "Alessandro?" I ran back to the clinic while Kirsi stayed with the girls, and the nurses who I thought had recognized us earlier looked into the file and pulled out the correct label. I ran back. At 4:10 Dayssi and I sat in the chair together for her second (and ultimately, third) poke of the day. She put her head on my chest and, having skipped her nap two days in a row (she is experimenting with staying up all day, heaven help us), she fell asleep. Slept through the first (second) poke and all of the squeezing. But then her finger dried up, so the nurse had to poke her again. She slept through the second poke too; didn't even flinch! That is some good coping.

Dayssi's counts look good. She is riding her new bike with much mojo. India is now working on riding wihtout training wheels, which is also a big thrill. And, she did two whole pages of writing in the last two days, without asking for any help with spelling!