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!

Summertime

Just a quick update to say all is well. Thanks for checking in. Both India and Dayssi had evening playdates last night so Jim and I had a fun adults-only dinner with good friends. Our dear friend John is visiting today and we'll have some kind of adventure on Monday, not sure what yet. It is nice to be on the precipice of summer.

One Year Anniversary

I know it has been a while since we've posted -- sorry to those of you who've been missing an update. Dayssi is doing very well, looking and feeling great and living her life as it should be more and more each day. She loves school, is learning to navigate her new, very exciting, sometimes intense friendships there, is separating from me more easily and even going regularly to swim and, finally, dance class. She is learning to swim and can hardly contain the thrill of being able to jump into the pool by herself, swim a little, and dive for toys. She also ventured back to dance class (after watching her classmates get a lollipop after the recital!) Her preschool teacher reports that she is on-track developmentally in every way, and we are just relieved to see her growing and blossoming like a regular 3 1/2 year old.

India is also doing really well. It is hard to imagine but she has less than a month left in kindergarten. She's working on reading and writing, still enjoys dance and gymnastics, and is looking forward to trying all of the new activities we have planned once school gets out. She'll have a week off, followed by a week of tennis lessons, followed by a week of theater camp, a week off, then two weeks of day camp, a week of science and art camp, and then we head east for a month of friends and family. I probably over-scheduled her, but we missed everything last summer because of our last minute change of plans.

It is amazing, but last year at this time Dayssi had just been admitted to the hospital for the first time, and we were trying to absorb that fact that she was on an oncology ward with a leukemia diagnosis. A lot of people dread this one year anniversary, but for us, thank goodness, it just feels so great to have a year of treatment under our belts, no signs of relapse, no major complications or setbacks, two daughters who look and feel healthy and, it appears, happy, and a solid marriage. Jim and I both received accolades at work (and one of us won a national wrestling championship but I'm not naming names), and I am actually enjoying work more right now than I have in years. If you ask me, the past 12 months could have been much much worse.

Anyway, we aren't celebrating this anniversary, but we'll do a little something on the anniversary of Dayssi's remission, which is just about a month away.

We are not the only ones out there who've had a rough year, and some of you are still in the thick of it, so we're still hoping for some more good karma. We love you. Hang in there. And if you need a smile, check out that picture of India and Dayssi in the bathtub from a few posts ago!

Dayssi's Marathoneuse

This Sunday a fantastic woman and former student of both mine and Jim's will run a half marathon, in honor of Dayssi and a childhood friend of hers, to help raise money for the Leukemia and Lymphoma Society. Her name is Florence, she is French (hence, the title), and this is her first roadrace ever, I think. The race, sponsored by the Leukemia and Lymphoma Society's Team in Training, takes place in Saddle River, NJ. Florence will run with a picture of Dayssi somewhere on her, and if you happen to be local, I urge you to go watch, cheer her on, and give her a huge hug (or at least a high five)!

Here is a web link to Florence's webpage, where you can find out more about Team in Training, make a donation, and read her blog about her experience training for the run. It sounds like torture to me. What an amazing commitment she has made.

http://www.active.com/donate/tntnyc/FNmarathoneuse

I should mention while on this topic that one of Dayssi's incredible pre-school teachers, Christina, ran a marathon for LLS Team in Training last summer, wearing a badge with Dayssi's picture on it, shortly after she was diagnosed. Christina had run before, for her grandmother, and the race took place so early in Dayssi's treatment and I was so shell shocked that it didn't even occur to me to go watch or even post about it here. I was incredibly touched by that gesture, as I am by this one, but I doubt Christina had any clue.

Meanwhile, we are all doing fine for now. Dayssi was really worn out on Tuesday and Wednesday from all of the chemo, but today she seems to be on the upswing. The steroids are having their usual effects, but a new one is that she seems compelled to smack us, with a smile, on whatever body part is most accessible. It is annoying for me, but dangerous for her as it is also really really annoying for India, and she smacks back! So much for our no hitting rule. When it's me against the steroids I tend to buckle. Anyway, Saturday morning the steroids will have all been ingested, and by Monday, with any luck, the smack attack will be over as well.

Go Florence!!!!

Done with Another LP

Dayssi had her lumbar puncture this morning and it went smoothly. We had some trouble at the clinic with her blood draw yesterday, trying to use the IV in the back of her hand, which is necessary to adminster her vincristine. Three sticks in the back of the hand, and the nurses (two different teams tried) couldn't get any blood out. Finally they administered her vincristine, which went in fine, and we went to the lab for a finger poke (that makes 4 pokes altogether). Next time we'll use the finger poke for labs, which she doesn't mind (much), and the IV for medicine. It will be much less traumatic for both of us.

Apparently when the needle goes into one of the tiny veins in her hand it can block a valve from another vein, and when trying to suck the blood out the valve gets sucked closed.

Dayssi is a very tough little cookie. No crying yesterday, even though the anesthetic from the patch had worn off by the time we got the medicine into her. She said it hurt. This morning her legs hurt, and her she felt nauseous, and she cried because of all of this and the fact that she was hungry and couldn't eat while India was having her breakfast.

Meanwhile, she went happily to her LP and when she woke up from anesthesia she popped up on her gurney and wondered why so many other kids were crying. I gave her some Fruit Loops (big treat for having to fast) and let her take it all in. I got her home, where she gets to lie down and watch a movie. So for now things are looking up.

Quick Update

Sorry I've been off task. All is well. We are headed to a picnic in Berkeley today, hoping to stay dry. Dayssi has a lumbar puncture on Tuesday (once every three months) to check her spinal fluid and to give her some preventative chemo for her central nervous system (the drugs she takes via her blood stream don't cross the blood brain barrier, but of course the leukemia can. They'll give her general anesthesia and the procedure will take about 20 minutes, assuming all goes well as it usually does.

We had cousins visit last weekend (Stephen, Frances, Evan, Aiden and Avery) and I've been waiting until I could post pictures before writing. The pictures are still on my to do list. Along with everything else.

What Happens in Vegas is often overrated

For the record, I won $5... but it cost me $11

What Happens in Vegas

We just returned from three days in Las Vegas. I'm not allowed to report everything that happened there but if you want to have some fun, ask Jim whether he won anything.

It was a great getaway. We saw a couple of shows, had some great meals, spent half a day in a great spa, and mostly marveled at the gambling. What a racket. I don't have time this morning for a proper tribute to this mecca of human hedonism and irrationality, but Las Vegas has to be one of the seven wonders of the world. It is just mind boggling on every level.

The girls had their own adventure, sleeping over for two nights (!!) at Candy's with her girls and their pets. They crashed early last night and right now they are in the bathtub in matching swimsuits with matching goggles, warming up after having chased one another around the yard with the garden hose. Perfect.

Dayssi's Wish

The good thing is that there is little to report from the front lines in Dayssi's battle with ALL. She continues to do well, endured her monthly IV chemo on Monday without even a whimper ("I'm not gonna look and I'm not gonna cry!"). Today she is a little under the weather and the steroids haven't quite kicked in yet, but I feel confident that she and we will tolerate whatever is coming this week, and that by this time next week she'll be well on her way back to herself.

The Make a Wish folks came by the other night to ask Dayssi whether she has a special wish. She said that she wants to meet a real ballerina. They asked her what that means, and learned that she wants to go to a real ballet and meet a real ballerina and see the ballerinas putting on their costumes. The volunteers looked undaunted -- it seems doable and they are looking into it; no promises yet. They asked her for a second wish as a back-up, but she said she couldn't think of one. So we've been doing a lot of fantasizing lately. India suggested wishing to have one of Dayssi's baby dolls turned into a real, live baby! India is into magic lately and I think she's just curious to know if they could actually pull that off. But nothing else has captured Dayssi's dreams yet, besides the ballerina.

As I write this, I'm reminded of something that Dayssi said to me during the first week of her treatment, when she was still in the hospital and enduring all kinds of torture. I was holding her on my lap, trying to convince her to take one of her yucky medicines so that I wouldn't have to pinch her cheeks and force it down. She looked out the window and said, "If I was a bird, I would fly away from here." It is one of the only things about that first week that I remember.

Birthday and update

All is well. India turned 6 on Wednesday and we've been enjoying ourselves. It is high season on India's social circuit -- I don't remember what happened in early June of 2000 (well, I do remember some things!) but apparently there were many, many children conceived at that time. Birthdays, and birthday parties, galore!

Dayssi is feeling great, attending school and swimming class with increasing enthusiasm. She has a wonderful friendship blossoming with a little friend from school. It is one of the sweet, compassionate girls I wrote about on the mud-fall day. Dayssi and I both adore this little girl, and the feeling appears to be mutual (at least where Dayssi is concerned!). The friendship is a beautiful, beautiful gift, to Dayssi and to me.

Dayssi's not sure about ballet these days -- she feels very shy there. But we are still offering the classes. She has a performance coming in May, and I am hopeful that she'll be up for it. They are doing "I Just Can't Wait to be King" from the Lion King. No pressure though. She has plenty on her plate for now.

Grandma came to surprise India last Monday and has spent the week with us. It has been great to have her here.

Will try to post some pictures soon -- Jim is directing a 2-week exec ed program and hasn't been around much. We need his technical expertise to pull that off.

Ouch!

Today is one of those days -- we had a little mishap this morning and I can still feel the sting. Dayssi was in a great mood today, excited about going back to school (it has been weeks) and feeling good. I was excited to have a morning free, to ride India to kindergarten on the bike, take India to the hospital for a relatively harmless finger poke, and then take her to school and hang around long enough for her to start getting comfortable again.

She was all excited on the way to school, and we agreed that I would stay until snack time -- specifically, when the teacher starts to read a book to the snack table -- and then I would leave her there. As we got closer to the classroom, Dayssi got a little more quiet, asked for her nana, and wanted to be carried in. She was feeling shy, hiding behind me, trying to walk between my legs holding both hands. But we got ourselves settled and skipped out to ride the swing, which is one of Dayssi's favorite activities at school.

We got to the swing area where, because of the recent rains, there were big red boards (like bridges) underneath each swing so that the kids wouldn't have to stand in what were, last week, big puddles of water. Now they are little shallow pools of thick mud. As I was saying hello to a teacher, and Dayssi was climbing onto the swing in some kind of silly way, she somehow fell off the swing and landed hard, face-first, in the thick mud underneath the red board. The first thing I heard was the dull thud of her forehead hitting the ground -- a truly horrifying sound for anyone trying to care for a child -- followed by a loud heart-breaking wail.

Is there no dignity for this child? Is it not bad enough that she has to miss out on so many aspects of what she should be enjoying at this time in her life, especially regular school and playmates, comfort with a social situation at school that is truly hers, where she feels she belongs, and that she has to tolerate regular hospital visits, pokes, gross medicines and their many side effects, when she sees clearly that no one else has to put up with this crap? That she knows she is seriously ill and that it makes her different? She fell off the swing on her face in the mud today at precisely the moment that was she trying to let go of her self consciousness, trying to act like a regular kid who belongs in that yard on that swing. Dammit.

I scooped her right up and held her on the grass, while she sobbed with her little muddy face buried in my sweatshirt, and helped her clean up with a warm rag and an owie sponge for the abrasion above her eyebrow. Some of the kids came around -- in particular, the same sweet girls who are always watching her and asking about her, who comment gently on her hair and ask why she has a pacifier, who seem worried about her, who want to be nice but usually talk more to me than to her. And she started to talk to them about how her dad had an owie on his forehead last week but he didn't cry. Soon one of the teachers invited her to come and plant some seeds, which she did, and then very quickly seemed to recover. She was ready for me to go at snack time. And when I got to the office, I just bawled.

Rock and Roll Bunk Bed

Dayssi had vincristine on Monday, and she is just finishing off her monthly steroid pulse; doing fine. India is also very well. Last night as I was on the lower bunk with Dayssi, trying to wake her to take her pill, the bunk bed started to shake and move for about 5-7 seconds. I was thinking, "What the heck is India doing up there?" It felt like she was jumping on the bed, but I knew she was asleep. After we got the pill down I came from te girls' room into our bedroom and Jim asked, "Did you feel that earthquake?" Sure enough. Biggish one, centered in Lafayette, which is quite a bit north of us. The girls slept right through it.

It has been a busy week. Jim and I threw a dinner party for some LCC alums on Tuesday, had our regular date night (sushi with a friend) on Wednesday, and I am teaching this weekend in a program called "Women Do Lead" for Stanford alumni. We had the kick off today and it was pretty exciting. I love my job.

Ski Week

Just back from four great days in San Diego, where we took in Legoland, Sea World, and the Wild Animal Safari. Lots to share about this trip but here are a few photo highlights.

We managed to get through the entire vacation with NO VISITS TO THE ER!!! Hallelujah.

Back in and out of ER

Jim and I were enjoying an early Valentines Day dinner when we got the call from home that Dayssi was complaining of an ear ache. She and I were back in the ER by 8:00pm with a fever of 101. Luckily it is a slow night in the ER and we have done all of the routine tests and received results already. Her ANC is 570; below 500 is neutropenic and would've led us to be admitted. Phew. She has an ear ache but also her lung does not sound clear even after the antibiotic prescribed last week so they are prescribing a different antibiotic that should take care of the bacteria in both.

Dayssi was not overly stressed by the IV tonight, just a little nervous, and she did not fight or resist at all. We used the special patch that both numbs the skin AND plumps up the veins. Nice. One poke with one whimper and that was that. She reports it did not hurt, but she insisted on watching and was scared when the needle went in.

India's throat was still sore this morning so I kept her home from school. She was determined to deliver the Valentines that she made however, for everyone in her class, so Kirsi took her to school just long enough to wash hands, deliver the Valentines, pick up her own bag full of Valentines' treats, and come back home.

India's Turn

I took India in to the urgent care after work today because her throat hurts so much she cries every time she swallows. The doctor took a look and said no strep, just the beginning of a bug that he hopes is not the flu that is going around, which has high fever, cold, cough, sore throat, stomach cramps, and apparently lasts forever. On the way home we stopped for popsicles and I saw a colleague who reported his son has been out of school for two weeks with it. Ai yai yai.

Otherwise all is well :-)

Epilogue

Dayssi is on the mend. We arrived home from the ER at 4:20am on Friday, just exhausted. At one point during the drive, which I have done at least once a week for the past 9months and know like the back of my hand, I literally could not figure out where I was or what direction I was driving. It took me about 7 seconds to get the synapse to fire. When we got home I plopped Dayssi in bed and snuck in to tell Jim that we were home, and to ask him to get India ready and take her to school in the morning (2 hours later) without waking Dayssi and I. He whispered "ok" (India was sleeping next to him) and I hauled my tired a$$ into the top bunk in Dayssi's room. To my horror, I was awoken at 7am to the sound of Jim valiantly trying to keep India from waking us while he was wretching in the bathroom. Serious, serious stomach bug. At 7:03 he poked his head into Dayssi's room and informed me that he wouldn't be able to get India to school.

The adrenalin kicked in again, big time, when I realized that there was a decent chance that at least one of us girls would catch that bug within the next 24 hours, which, no matter who it was, would mean at least one more intense tour of duty for me without any recovery sleep or even time to decompress from the stress of being in the ER all night (just for starters, 3 needle sticks before a successful blood draw, and this was the first time drawing blood from inside the arm). The first day of Jim's bug my germ paranoia was relatively easy to manage, as he was in bed and mostly in our bathroom and I just kept everyone away from him. I know it sounds cold -- poor Jim! I wouldn't even pat him on the head without wearing latex gloves (not really, but you get the picture). Hey, I did call him on his cell phone every few hours to make sure he was ok!! But as soon as he was showing signs of hunger I was crawling all over him to sanitize himself, and every inch of the house that he had touched in the previous 48 hours. The guy got no sympathy. If you see him, be nice.

We'll have to add this story to our "bad wife" repertoire, which includes the night that Jim was taken to the ER by paramedics (it was a scare, nothing serious), shortly after India was born, and I told him to call me when he was ready to come home and then promptly fell back asleep without remembering to turn on the ringer, which we had turned off to protect our sleeping newborn and our exhausted selves. He had to walk home from the ER in his socks, and throw pebbles at the bedroom window to wake me up and let him in. On his way home from the ER. I'm not kidding.

Jim feels fine now and no one else has caught the stomach bug. Dayssi is recovering from whatever gave her the fever, and she will complete her course of antibiotics tomorrow. Her counts are low again today, but that is not surprising while fighting a virus. So we'll skip school again for the rest of the week. India is complaining of a sore throat tonight. And so flu season continues.

Trip to ER

Greetings from the Emergency Room. I'm writing mostly to relieve tedium. Dayssi and I came in at 8pm with a fever of 101 -- it is 3am and we are still here. She fell asleep around 1am, after watching The Little Mermaid twice and another sweet movie by the director who made Spirited Away. Now I'm just trying to keep myself from falling off the chair. Thank goodness there is an internet connection in here!

Updates: Dayssi's ANC is still high so we are going home "tonight." What this means to me right now is that we aren't being admitted to the hospital or to the relative luxury of the pediatric oncology ward with real-ish beds and a place for two people to lie down; instead we are spending the night in the emergency room, where Dayssi is on the gurney and I am actually standing at this terminal. We learned we wouldn't be admitted at around 12:30am. But we still hadn't been seen by a doctor at that point. The doc finally came in around 1am and listened to Dayssi's chest, and ordered a chest xray.

Oops -- just now as I was getting my rant on a roll the doc came in (I tried to hide the screen with my body). She doesn't see any pneumonia on the chest xray but she heard "crackles" in Dayssi's lung and is going to treat her for pneumonia with antibiotic.

So, we are on our way out. I am only waiting for the prescription and release papers. But as anyone who has been in an ER knows, even this can take hours. I am hoping to get us home before dawn.

Counts Are Back Up

Dayssi's ANC is back up, way up, again. Phew. She will stay on 50% of her prescribed chemo dose for another week and if counts are good next week, we'll raise that to 75%, and finally back up to 100%. You have to appreciate what they are trying to do with the drugs during this phase, which is to give her enough medicine to keep the leukemia in remission (no one really seems to understand how this works, only the treatment amounts and schedules that seem to be effective), while not giving her so much medicine that her immune system is unable to function. When children with Dayssi's leukemia profile don't survive, it is usually because of dangerous infections, not because of the cancer. So that makes me feel better about the reduced chemo dosages and their conservatism on dosing. Some kids stay at 50% during much of long term maintenance and I don't know that it effects their long term survival. I saw slides from a presentation recently that was delivered at a conference of pediatric oncologists or pediatric leukemia specialists. It suggested that one of the hot areas for future research is, knowing that many kids with good prognoses are probably being over treated on the current protocols, how to reduce the severity and toxicity of their treatment regimes. You can see the problem this poses for research: what parent is going to sign on to a clinical trial that is testing whether survival rates are adversely affected when LESS medication is given?

The girls are doing well. I hope to send Dayssi back to school either tomorrow or Friday this week. India is doing great too -- starting to experiment with reading a bit and can now recognize about 10 words or so. She still prefers to listen to the story rather than sound out words when we are reading together, but she likes to try to write short messages on her own. This is how they are teaching reading at school, and I think it is great. The kids make pictures and are encouraged to write words that describe what is happening just using sounds. If you don't know what to look for, the writing looks like a random string of letters. But when she tells you what it says, you can see that the letters do correspond to sounds. It is very cool. Earlier this fall she used the "TH" sound correctly, which I thought was pretty cool. India is also becoming seriously responsible, initiates clean up at home (Grandma, can you imagine?) and wins "Clean up Champ" every few weeks at school. We've been talking about her birthday party and I have been so pleased at her desire to include everyone from her class at her party. Some of the kids are really her friends, and others she wants to include so that they can have fun or not feel excluded. I LOVE this age. And I LOVE this child.

HAH! I laugh in the face of surgery

Dayssi had her port removed today. All went well and she even came home with the mask that administered the "sleepy air" complete with artwork generated by her nurse. Dinner and bedtime have been no different than any other night-- stalling and all. So she is doing fine and we have photgraphic evidence to prove it...

[January 30, 2007 7:10 pm PST]

Humdee Humdee Hum

The girls have a book about two orange socks that get separated when the Dad does the laundry, and one gets bleached white. The white sock gets tossed out of the drawer (the kid will only wear orange) and is lost under the couch. The orange sock is the more timid of the two, and relies on the other one to calm him down, which he does by humming, like that.

I realize now that I wrote that it doesn't explain very well why I am humming now to myself, but whatever. I am feeling a little edgy. Dayssi is just barely out of the neutropenic zone -- ANC up to 562 or something like that today. It is creeping up, still no REAL reason to worry except that she is so vulnerable to infection in this condition. Another week of missed school, etc. The NP says she is clearly recovering from whatever she had because her "monocytes are 24." I have no idea what that means.

Good news is that Dayssi will have her port removed tomorrow, and she is good and ready. The last three times we've accessed it she has been really stressed out and unhappy about it, and I've needed help holding her down while she fights, kicks and yells (but doesn't cry). I hate it, but I'm sure she hates it more. Tomorrow they'll take it out, give her some intrathecal methotrexate (into the spine) and we'll get some vincristine via IV (presumably they'll insert it while she's sleeping). We'll start 5 days of steroids and, as soon as her counts pass 750 (I think) we'll get back on the other nightly chemo drugs. And, on Thursday they are going to check her counts again, and we will draw blood from the inside of the elbow. Oh boy.

I'm still feeling sad from the recent deaths I wrote about last time, and am even sadder today to have learned that a family from Dayssi's pre-school just lost their newborn, who was about 5 weeks old, and who seemed healthy and asymptomatic before hand. If you are inclined to pray, please add the Wilcox family to your list.

Almost but not quite

Dayssi's counts are still too low for chemo so we are off another week. Her ANC is 476, up from 300, but not 500, which is the "ok" criterion. No cause for concern. This is normal for ALL kids, who will typically have 2-3 episodes of low counts due to viruses, etc. during maintenance. Dayssi is producing a lot of lymphocytes (?), which indicates she is fighting a virus. And she has a cold and a cough. The overall pattern of blood work shows also that Dayssi's platelets and hemoglobin are normal, which is important for ruling out relapse. But we have no reason to think that is going on anyway at this point. I learned recently from parents whose kids have relapsed, and who are reading all of the relevant literature, that relapse is rarely diagnosed from bloodwork, it tends to manifest in terms of the same physical symptoms as the initial diagnosis, and is then only confirmed in the bone marrow. So, my advice to those of you who are feeling panicky is: breathe.

Jim returned this weekend from his annual ski trip with college roommates. The girls and I had a bunch of parties while he was away, including our favorite baby's first birthday party, a lovely grown-ups only dinner party, a ladies-only 40th birthday extravaganza for one of those fabulous friends I was writing about earlier, and a trip to the doughnut factory!!

So it was a busy weekend with many reasons to celebrate. But I spent most of the weekend with a lump in my throat, knowing that two young children whose families I barely know were losing their respective battles with cancer while we were playing. Catie was fighting a brain tumor and, in prepration for a bone marrow transplant, caught a fungal infection that took her life on Friday morning. Donovan was diagnosed with a rare form of infant leukemia shortly after birth, and after nearly two years of trying every treatment imaginable, he finally lost his battle on Saturday night. I have no right to call these people my friends, but having followed their stories, sent messages of support, and witnessed their courage, humor, hope, love and ultimately, their loss, I care for them as though they are my friends, and I am heartbroken.

A week off chemo

Dayssi did not make counts today, so we are off chemo for a week. Her ANC is around 300, so she is neutropenic, and we won't send her back to school until it is closer to 1000 (1500 is at the low end of normal). Probably she is fighting a bug -- India missed school on Thursday and Friday last week because of a cold and sore throat, and Kirsi, who stayed home with India last week, has been out every day so far this week with the same thing. Dayssi was full of energy today, although by bedtime she was starting to unravel, and her nose was running a little. As long as she doesn't get a fever we should be able to ride this out at home. Fingers crossed.

The port comes out on January 30, assuming counts are up and Dayssi is healthy. Then we'll have to adjust to having blood drawn from inside the elbow. Whenever I talk to Dayssi about this she says " But I don't like that idea." They tell us they have an even better numbing method for that spot than for the port. But she is not persuaded. Something else to look forward to.

To end, here's a cheery anecdote. I met last week with one of Dayssi's pre-school teachers for a parent-teacher conference. We talked at length about how Dayssi is adjusting to being back at school, her medication cycle and side effects, etc. I mentioned at the end of our conversation that many children do show cognitive and motor deficits (which respond to therapy) after being treated for ALL, but often they don't get noticed until elementary school. The teacher laughed and said, to the contrary, she had witnessed some very impressive problem solving behavior just that day. Apparently, during snack time, this teacher was talking with the children at her table about a recent trip to Spain. She told them that she had seen a very interesting building that had about 25 chimneys! The kids were very interested in that and she asked them where they thought you should leave cookies for Santa Claus if there are 25 chimneys in the house. The first few kids to answer (some of whom are more than a year older than Dayssi, the teacher pointed out) said "the first chimney" or "the chimney with the stockings hanging on it," and then Dayssi said "you could leave the cookies on the roof, and then Santa could eat the cookies first, and then come down the chimney." Pretty good, eh?

Quick One

All is well. Dayssi is on antibiotics for an ear infection that was diagnosed on Friday, so she's almost done with the medication. She is 4 days into her 5-day monthly steroid pulse, and is beginning to show subtle signs of the side effects, e.g., she is a little more clingy, and little more prone to tantrums, and a little more fixated on salty foods. She also had vincristine on Tuesday and has had a sore jaw. By Monday with any luck she'll be feeling better, in time to go back to school on Wednesday.

Jim and I are ok, too, relieved that the holidays are over and looking forward with hope toward a better year.