Dayssi's Wish: Backstage at the San Francisco Ballet’s 2007 Nutcracker

Well Dayssi’s wish came true today. We were ushered up to San Francisco in (an embarrassingly long) stretch limo to see the SF Ballet’s performance of the Nutcracker. We’ve seen many versions of this classic ballet, but this one was over the top. The dancers were magnificent. The musical performance was inspired, and the production was sumptuous and magical -- from the costumes, to the set, lighting, and special effects.

After the performance, we all went backstage to meet the crew, the lead dancers, and the managing director of the Ballet. Everyone was wonderful and Dayssi and her sister India were the center of attention. The stage manager made it “snow,” even heavier than it had during the show, and the girls danced and had a snowball fight with their new friend Lorena, one of the company’s prima ballerinas. They got to ride in Clara’s magic couch as well as the Snow King and Queen’s Chariot.

The folks from the Make A Wish Foundation and the Ballet were amazing. The event is one Dayssi will remember for a lifetime.

Some action shots are included below for your viewing pleasure.

Vincristine Shmistine

Mom is more upset about this than I am. Not that she isn't entitled to be angry about what they did to me... but I am OK so don't y'all worry too much.

Love Dayssi

PS: Do you like my stickers?

Vincristine burn

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.

Dayssi's 15 minutes

Yesterday the Make A Wish Foundation announced at a press conference that Dayssi is their 4500th wish child. So far the only press coverage we've seen is at the Palo Alto Daily News (http://www.paloaltodailynews.com/article/2007-11-9-pa-ballet), where there is a nice story and cute photo of Dayssi hugging the real ballerina who came out from her rehearsal with the San Francisco Ballet just to hang out with Dayssi. She was very kind, and she gave Dayssi a used pair of pointe shoes with her signature on them.

But this was just for the press. Dayssi's real wish (to meet a real ballerina) will be granted next month when Make A Wish and the San Francisco Ballet host us at a performance of the Nutcracker, and invite us backstage afterward, where Dayssi can now reunite with her new friend (who plays the Sugar Plum fairy in some shows).

These other photos were taken by one of the Make A Wish folks. As usual, it was hard to get Dayssi on camera. She turned the photographers into paparazzi who had to wait patiently for most of the morning and then chase her down every time she emerged from behind one of us, shutters clicking madly. Above she is holding a beautiful giant card they made for her with signatures from all of the SF Ballet dancers inside.

Here Dayssi and India are posing between two of the amazing Nutcracker costumes they brought out for the occasion.

http://www.paloaltodailynews.com/article/2007-11-9-pa-ballet

Halloween 2007

We had a great night and collected lots of candy at our old stomping ground (Stanford West).

Goth Girl and Pretty Kitty pics below

Dayssi Turns 4

Funny how the birthdays become like the holiest of holy days. I want to get on my knees and put my head on the ground and thank God for giving us another year with our child. Dayssi turned four last night at 11:59 pm and she is still here. She is growing and learning and throwing herself at her life with everything she has. She loves and is loved by everyone. What an amazing gift. Thank God.

Meanwhile her treatment continues. Dayssi had a lumbar puncture on Monday and intrathecal chemo. She gets this treatment only every three months now and she and I were both out of practice. I let the anesthesiologist pre medicate her against my better judgment (she was a little wild, as you all know she can be, but was happy and entirely cooperative). I didn't feel like challenging him and I've been giving myself a pretty hard time about that. Dayssi woke up from the procedure and sobbed inconsolably for 45 minutes, which hasn't happened since the first time she was put under. Totally unnecessary. But, not the end of the world. It's just that the fighting is getting old.

India is doing beautifully, growing taller and more mature, working on reading and writing with incredible energy and enthusiasm. Jim and I are both in the fall teaching trenches, pounding it out with everything we have, running on reserves. Dayssi is having a small birthday party on Sunday and we'll post some pictures afterward.

We Are Back

Apologies for the radio silence. The fact that life is getting in the way of my blogging is, I think, a good thing. We had a great month on the east coast with lots of adventures (I will try to update with pictures): India lost her top front tooth, she learned to water ski, and to body surf and since our return, she has learned to ride her bike without training wheels. She has started first grade and successfully navigated her first real challenge at school, which was recess. More on that later. Dayssi learned to actually swim, she had blood work and vincristine at 2 different hospitals without incident, knocking the socks off of the nurses and lab techs who repeatedly called in at least three folks to treat her, assuming she would have to be held down. Not my girl. She smiled and talked calmly through all of it. She was healthy the entire trip and is growing like a weed -- Jim commented the other night that she looks like a little bean. Bottom line: the girls are absolutely thriving.

We are also doing well, having spent a month not REALLY working (well, just a little here and there), and not in health-crisis mode. But everything was waiting for us when we got home, so we are both swamped for the time being. I start teaching on Monday, Jim starts the following week, and so it goes.

Meanwhile, to get political for a moment, September is Children's Cancer Awareness Month, and funding for cancer research has been cut recently. Here is the url for a little video produced by some parents I know to educate and inspire people to encourage their lawmakers to restore funding. It is a beautiful tribute and it will give you a window on to the reality of childhood cancer. You'll have to cut and paste the url into your browser.

http://www.youtube.com/watch?v=AGS4yE5v9rM

Summertime Update

Sorry we've been away from the blog. We're having a great great summer, so great that it almost makes up for last summer, which was the pits.

We've been really busy with lots of camps and swimming and picnics, and friends coming and going, and planning for our first real vacation since I don't know when. We are leaving for the East Coast this week and blogging will probably get even more sporadic afterward. My plan is to stay as far away from computers (and hospitals) as possible.

Dayssi had an LP last week, with intrathecal methotrexate, and vincristine, and a weekly steroid pulse. It knocked her down, for sure, but as of today she is up again. On our trip we'll have to continue Dayssi's weekly blood checks, and she'll get Vincristine in Burlington VT while we are in Plattsburgh. Fingers crossed that it all goes smoothly.

India starts her final camp tomorrow, and Dayssi has a swim camp this week too, which will be so great for her. Dayssi has, shall we say, a very high need for mastery. She throws herself completely at whatever new challenge comes her way; this summer her energies have been trained mostly on learning to swim independently, writing and reading letters, and lots of new exciting friendships at school. India continues to float along like a little buddha, taking in everything with a contented smile, happy to be in the moment and take it for what it is worth without looking back, or forward. They are so different, our little doodles, and both are so inspiring.

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!