Poofy Dress Greetings

Here, finally, are a couple of shots of the girls at Cousins Mike and Ann's wedding. Unfortunately Dayssi isn't smiling in the close up because she doesn't like to have her picture taken. I don't like to torment her with the camera, which is why there aren't more, better, shots. But, even without a smile, you can see how magical they were in the dresses which, after a crazy shipping fiascoe, finally landed at our hotel, smooshed into a small Fed Ex box, exactly one hour before we left for the ceremony. Phew.

Ring around the Rosie was lots of fun though, and the girls were mesmerized by "the bride." Ann, you are officially a legend in our household, right up there with Kim Possible, Oprah and Barbie (who tends to rescue her nameless male counterpart rather than the other way around). Our girls tend to think of themselves as knights in princess clothing. I love that. There's also been a lot of wedding talk, especially from Dayssi, who told me the other night with determination, "Mama, if I can't marry Daddy then I'm not getting married."

Anyway, the wedding was beautiful and it was especially magical for the girls. Thanks Mike and Ann, for including us!

Granny and Grandad were here for Christmas; they just left today. It was a nice, long, 10-day visit, but I think there are still unopened gifts lying around. Granny and Grandad LOVE to give presents, and the girls kinda like it that way!

The holidays have been fun but I have to say I'm exhausted. Jim and I went to the movies today and I started crying during the previews and didn't stop until the feature was done. We saw Dreamgirls -- it isn't THAT sad, either. But I thought it was very efficient of me, to be able to cry on a dime during the only two hour period that I've had to myself (no kids, no guests, no parties) in the past two weeks. I'm kinda like that.

Among other things, I'm very emotional these days about friends. There are some people in our lives who, especially during the past 8 months, have stunned me with their unflinching stamina and presence. We have not always been available, reliable, responsive, or very much fun. We are rarely proactive. Dayssi has often felt yucky, looked scary, and had an immune system that requires constant vigilance on everyone's part to avoid the spreading of germs. But nothing seems to drive these folks away. They aren't afraid of reaching out or assuming too much or saying the wrong thing. They understand that sometimes you need to talk about how awful it is to have a kid with leukemia, and other times you need to laugh at the insanity of it, or just talk about work, or gossip. They ask how we're doing and, whatever comes back, they take it, they listen, they laugh or cry with us, and they do us the great courtesy of trusting us to be able to bear the weight of their own struggles, which allows us to stay close to them.

It is another great gift of Dayssi's leukemia that these kinds of people have appeared and revealed themselves to be the remarkable people they are, showing me, without knowing it, how to be a better person myself.

All is well

Sorry for the lapse. Just busy, and waiting to find the camera, and re-attach the computer, and shopping, and attending lots of holiday parties, and trying to squeeze in our Hanukah celebrations around the edges, and Granny and Grandad visiting. Phew.

Dayssi's counts are holding steady and she feels great. She has a cold and cough but we checked her out at the hospital on Monday and there is no cause for concern.

Will try to post again soon with some pictures.

Happy Holidays!

Celebrations

We are off to cousin Mike's wedding tomorrow in Arizona. I got the girls some gorgeous poofy wedding-ish dresses just for fun. Will try to take some pix and post when we return.

Everyone has a cough right now but Dayssi's counts seem to be stable and nothing is escalating out of control. She did start a new cycle with vincristine and a 5-day steroid pulse on Monday, so she is not feeling tip top. But the side effects should resolve by end of weekend for sure. I hope she'll feel well enough to enjoy her poofy self at the wedding!

We celebrated my birthday on Tuesday too, and that was a lot of fun. The girls bought me earrings (very glitzy, but I will be wearing them!) and India's kindergarten class suprised me by singing happy birthday when I dropped her off. I played hookey and spent the entire day with good friends, acting like ladies who lunch and just generally being decadent. All of this, combined with a little get together on Saturday night, and lots of beautiful gifts, cards, flowers, phone calls and emails from far away friends, made it a fantastic birthday. Thanks everyone!!

Happy Thanksgiving

It has been hard to find the focus to write anything meaningful lately. So I've been putting this off.

Dayssi is very well, speeding along through LTM. Her counts have been stable, her mood is upbeat, she is physically strong and full of energy. And her hair is coming back in (peach fuzz at this point and, depending on the light, it looks either white blond or dark brown. hmm.) She is a little obsessed with death and dying right now. And I'm hoping that is just developmental. She seems to be playing right through it, with lots of morbid dialogue among Barbies and their friends, and she is sleeping fine. So with any luck this will pass, soon, as frankly it is a little unsettling for me to have to hear all of this dark stuff coming out of her cheery mouth and little bald head all of the time.

India is thriving -- loves kindergarten (and, we learned from her recent report card, is heartily loved in return), is making lots of new friends, developing new interests, and a new sense of herself as a growing-up girl. Last night at bedtime I leant down and told her "I love you, lots and lots," and she held my face in her hands and said "Me too (kiss on my nose), especially that nose of yours."

Jim is also in a very good place right now. He likes his privacy so I won't say more.

I, however, am a little off kilter -- exhausted, short-tempered, unfocused, and almost incapable of making any decisions or directing my own life in any meaningful way. Confused about what I am supposed to be doing, when. Kind of emotional, but not about anything important. Just not myself. Well, I guess the absent-mindedness IS actually kind of like me. But otherwise, no.

The psychologist in me knows this is to be expected. You keep all of these crazy fears and emotions bottled up inside to help others through a crisis, and when the crisis subsides and everyone else is doing ok, you just start to unravel. So, here it is -- I am officially unraveling -- and now I have to figure out how to deal with it. Concerned people: I am getting help, from loved ones and from a professional. And I am on a mission to reclaim my life.

Case in point: Thanksgiving weekend. We had a small family dinner at home. India and I gathered berries and greens from our yard and decorated the table, same as last year. The table looked beautiful and she was very proud. The food turned out pretty well but not as well as last year, which I now see was beginners luck (until now I thought I had displayed some raw talent!). Or maybe this year was the aberration -- I made a bunch of mistakes with the recipes, consistent with my observation about my current state of mind. So, the cranberry sauce was a little tart (I used a half cup of lemon juice rather than the juice of half a lemon) and the turkey was undercooked on the bottom (it was slightly frozen when we picked it up and it didn't occur to me to defrost before cooking, DUH.) The top of the turkey was delicious. I overcooked the stuffing, and the acorn squash, which was bad in the first case but kind of nice in the second. It can't have been all bad because Jim chowed down on leftovers after wrestling last night. As an aside, if I had realized the satisfaction in watching your man enjoying something you have made for him with your bare hands I would have tried cooking more often much earlier in my life!

We invited friends for dinner after a playdate on Friday afternoon but didn't really have enough food to make dinner for 8. So while the girls were playing under dads' "supervision" (just jokin' guys) I took my friend Carrie (who graciously made it seem perfectly normal) to the grocery store. We made burgers and salad, with ice cream cones for dessert, and it was so great to see them and to have a house full of kids again after all the weeks of isolation and quasi quarantine.

Friday night after they left we solidified a plan to stay in San Francisco on Saturday night and introduce the girls to some parts of the city. We booked a hotel in Fisherman's Wharf and headed up on Saturday afternoon post nap. By 5:15 we were in the Wharf, navigating huge crowds, taking in the sites and smells of crabs cooking and shells flying on the sidewalks. The girls were very excited about having crab for dinner until Dayssi realized that crabs have eyes. That killed it for her and, ultimately, for India. They had sourdough bread and pasta for dinner. Jim and I had crabs, shrimp, mussels and clams (you know how Jim likes to mix it up). Good stuff.

We stayed up until 9:15 (!!) watching the Cheetah Girls movie in our hotel room and finally hit the hay. Next morning we met Carrie, Bruce and the girls at the Glide Memorial Church in the Tenderloin for some great gospel music and so, so much more. I hesitate to describe this experience further, for fear of trivializing all of the truly amazing things about this church. If you want to know more: www.glide.org.

But that is not all. After church we took the girls on the cable car, from Fisherman's Wharf all the way to Powell Street, past Chinatown and the big Christmas Tree in Union Square. We waited in the rain to get back on the car, then rode back to Fisherman's Wharf, checked out of the hotel, and headed over to Chinatown for lunch. We couldn't find parking and it was pouring, so we double-parked on Jackson Street while Jim hopped into a tiny dim-sum place and grabbed a bunch of DELICIOUS treats for a lunch in the car on the way home. Dayssi slept though the whole thing but India enjoyed all of the different varieties of pot stickers and dumplings. When all was said and done, her assessment: "I like the colors better in Chinatown but I like the potstickers better at PF Changs."

This morning I THOUGHT I had a meeting at 8:30, so I drove India to school and sent Jim to the hospital with Dayssi for her blood work. Turns out the meeting is February 7 (as in 2/7), not November 27. Oops. I asked Jim to pick up a Zofran refill in the pharmacy at the hospital, but he couldn't get it and couldn't figure out why. Turns out I had called in the Zofran refill to the drugstore, not the hospital pharmacy. He did get the Septra at the hospital pharmacy, which is what I called in there. Can you even believe this?

I called Jim to apologize about the "wrong day" thing, and then had to apologize for the "wrong pharmacy" thing. And after all of this he didn't even yell at me or sound exasperated or anything. See what I mean? Jim is in a really good place. And I have so much to be thankful for.

Dayssi Rides

Yesterday both India and Dayssi rode bikes to school. Dayssi is peddling well but still not steering with any sense of cause-effect. The girls had a great time (India was very excited that Dayssi could ride with her) but I was a little stressed about whether or not we were going to make it to school before dismissal. Forget about on time. But, we were not late. Dayssi was mostly interested in showing the other kids that she could ride by herself but once everyone had oohed and aahed she was happy to let me push her trike with the handle, which obviates the need for both steering and peddling, and generally speeds things up (GRANNY AND GRANDAD, SELECTING THE PUSH HANDLE AS ONE OF THE TRIKE ACCESORIES WAS PURE GENIUS, THANK YOU).

India is out of school today with a tummy ache. It is too bad because yesterday her class prepared a Thanksgiving dinner, and they were supposed to eat it today. She was disappointed but is clearly not well, as she opted to stay home with Kirsi, instead of going to school, even though she did not want to miss the "feast". And if India says no to a feast, something is not right.

Jim and I are preparing for a long-overdue night away, as we are headed up to San Francisco on Tuesday to attend opening night at the San Francisco Opera. The preparations are not trivial, since this event is black tie and, needless to say, we have not been doing a lot of black tie lately. I think we've got all of our duds in order at this point, and we have a hotel reservation in the city. We were invited to the show. Now all we have to do is get ourselves up there and stay awake past 9pm.

Halloween Pics (at last)

Finally got the computer back up. Here are pictures from Halloween.



"Dayssi, India; I AM your father!"

Dayssi skates

All is well. We had busy weekend, including ice skating last night. Normally when we ice skate Dayssi rides around in the stroller, but last night she insisted on trying her own two feet. She was all over the place, falling in every direction possible and with very little body control at first, which she thought was HILARIOUS. By the end of the night she was shuffling around a bit without holding on -- maybe up to 5 steps or so without going down. Her determination was palpable, and her giggles just filled up the rink.

Finger poke this morning, no port access. It was a piece of cake. Afterward we went to school where I watched Dayssi hold court at her snack table. It is only her third day back after 10 weeks out, and it is only her 4th day ever at nursery school without India, but she acts like she's been doing this for years.

Check!

We have officially started Long Term Maintenance so I can cross that off my list. Dayssi did great this morning, no anxiety, no discomfort. We started her 5-day steroid "pulse" (once every month) and she swallowed the first pill with one sip of juice. She is a pro. She even makes the face of an adult taking a pill, that slack-jaw "I don't want to taste this thing so I'm not going to suck on it or crush it or let it touch any taste buds" kinda face. The Zantac, which follows the steroid, is her least favorite medication right now and I'm going to see if we can get that in pill form too.

We decided not to have Dayssi's port removed today although it was an option. We are having a little post-decision regret, having thought harder about the trade-offs (risk of infection versus discomfort having blood draws and monthly chemo without the port, so using IVs and regular inside of the elbow technology). We will probably have it removed in February, when Dayssi has her next lumbar puncture. No sense having an extra general anesthesia, which carries its own risks.

Her hair should start growing back during this phase, and she will be happy about that. Can't wait to see what it looks like.

LTM on Monday

Dayssi "made counts" on Friday (ANC 900ish) so we are scheduled to start LTM bright and early Monday morning.

The last few days have felt like a bit of a relief. Dayssi hasn't had any chemotherapy in three weeks and she feels so good! We're watching her exposoure obviously but without all of the meds and their potential side effects there is a lot less to worry aobut. It feels like a window on to what it might feel like someday to actually be done with leukemia.

Today we went to the Monterey Aquarium and it was amazing to see Dayssi's energy and to remember how, when we went last spring just weeks before her diagnosis, she had wanted to be carried everywhere. Of course we had no idea why. Karen and Erin, if you are reading this, Dayssi asked this morning several times if we were going to see Grace and Emily. And she asked a couple of times, "Mom, is Andrew the little one or the big one??" We even went to Bubba Gumps. Boy do we miss you guys!

Anyway, we're hoping that LTM will not slow us down too much, and that we should be able to get back to some more regular activities too, like dance class, and swimming class, and pre-school!! Dayssi's teachers have called me off and on to check in (she's been out for almost 10 weeks straight) and just last week Beth, the amazing music teacher, called to let me know that a CD she produced (on which India and I sang!) had been released. We picked it up on Friday and the girls have been listening to it more or less non stop. Both girls are clearly thrilled to hear the familiar songs and the voices of their teachers. It is perfect timing for Dayssi's re-introduction to school.

There is a kind of cool story about the CD. The producer, Beth, who is an incredibly talented musician and teacher, was the head teacher in Dayssi's "young two's" classroom at the time she was diagnosed. Dayssi was only attending school one day a week at that time but one of the songs they sang there each Friday was "Choo Choo Train." I always loved to sing this song -- had never heard it before -- and I used to try to invent harmonies just to entertain myself while singing it in the class. When Dayssi had to have her first procedure in the hospital I spontaneously started singing the Choo Choo Train song to try to calm and distract her (and myself!). I can't remember if I started this with the intial blood draws and her first IV, or the first spinal procedure, which we did on the first day of treatment, without general anesthesia (yuk, that was not fun). Anyway, it turned out to be a great intervention because the song describes a train ride that involves stopping at various people's houses (in class we sang about stopping at each child's house) and I could see Dayssi becoming completely focused on trying to anticipate whose house I was going to sing about next. And I imagined it was a comfort to hear a familiar song from school and to think about all of the people she loves at a time when she was frightened or uncomfortable. So it became a regular part of our procedure routine for me to sing this song while Dayssi was on the operating table, breathing sleepy air or waiting for some IV anesthesia to kick in. She would specifically request it. During the summer, when Dayssi started going back to school, Beth announced that she was making the CD and asked for parents to volunteer if they wanted to participate. I told Beth and Dayssi's other favorite teacher, Neely, that we had adopted the Choo Choo Train song and that I would love to sing it with them on the CD. Beth jumped all over the suggestion, writing lyrics and coming up with an arrangement that incorporated the visualization of journey past the homes of various story book characters on this train. Recording the song with Beth and Neely was, without question, the absolute highlight of my summer for so many reasons. They are fantastic women and it was so much fun to make music with them. We recorded the song about 10 times over two days. And the result is the first track on the CD. I think it sounds great and am so glad to have this memory preserved for us. Maybe I'll see if we can get the song uploaded on here . . .

I sang in a couple of other recording sessions with some of the other teachers and kids from India's class, including India. I think Dayssi came with us into the studio for a few of those but she didn't know any of the songs, so she didn't even try to sing. And I'm not sure if any of those made it onto the CD. It is hard to tell because I believe some of the songs were recorded multiple times with multiple groups. So India's voice might not be on the CD, but her picture ended up on the insert, which is a fun surprise!!

Jim had a big honkin' deadline on Wednesday and we are all enjoying its passing!

Will upate on Monday.

False Start

Happy Halloween! We were turned away from the APU this morning because Dayssi's counts aren't high enough to start Long Term Maintenance (LTM). They have dipped down again since our last post, and this morning she had an ANC of 610, which is 140 points shy of "ok for chemo." We spent a full 2 1/2 hours at the hospital anyway, getting ready for the procedure that never happened. We had to draw her blood and then wait for the counts to come back.

Dayssi and I wore costumes to the hospital, so that was kind of fun, and most of the nurses were dressed up too. India also wore her costume to school and the kids had a parade and Halloween party. Since Dayssi and I were released early we made it to India's festivities and we kind of tagged along so that Dayssi could be in the parade, which she loved. India was a super big sister, calling to Dayssi to come and participate in everything with her, to sit next to her for snack and for a class picture. I was very proud.

So I guess I shouldn't complain. The girls couldn't be happier today. But I'm disappointed that we didn't get the procedure under our belts, after all of the emotional prep work. I feel like we've been through the ringer, but we haven't. Kind of a waste. Oh well. We'll try again next week.

Kicking cancer's BUTT

Sorry if this sounds a little crass. I read recently that an especially spirited A.L.L. family made a slogan out of this phrase and used it to celebrate every milestone along their child's journey (which recently ended with a ritualistic tossing of leftover meds into a lake, witnessed by close family and friends who were all wearing T-shirts that say "I kicked cancer's BUTT," or, "I helped my sister/cousin/friend kick cancer's BUTT.") Fantastic.

We are having one of those days. Dayssi's labs this morning showed that her counts have already recovered. She does not need any blood transfusion today and her ANC is 1200, which is within the normal range. She has been tired and is sleeping a little extra, so I know her body is still feeling the effects of all of that chemo. But her blood is in good shape.

Next Tuesday, on Halloween, Dayssi will start what should be the final phase of her treatment. It is called Long Term Maintenance. She'll have a lumbar puncture to inject some methotrexate, five days of steroids, plus one nightly and one weekly pill. This cycle will repeat every three months until, barring a relapse or some other significant complication, July 2008, at which point she will be Off Therapy. Then we watch and wait for another two years, and if there is no relapse, she will be considered "cured."

Dayssi is a little butt kicker. But you already knew that.

India Lost a Tooth

I am happy to report that this is the big news in our house right now. India lost her first tooth on Saturday night while eating a banana before bed. We never found the tooth, so we assume she ate it with the banana! India burst into tears after realizing she had swallowed it, for fear that the tooth fairy wouldn't come. But we left a note for the tooth fairy, explaining. And she came, and left some money! India and Dayssi were both thrilled. Dayssi is still looking under India's pillow now and then to see if anyone is there.

Subtext: Dayssi is fine. She is full of energy and has no fevers. She has had a bad sore in her mouth, which apparently comes from her low counts, which somehow break down her mucous membranes. It hurts when she forgets to chew on the other side. So, thank goodness there is only one sore. Tomorrow we have blood work and we'll find out of her counts are on the upswing yet. Not sure what to expect.

Oma and Opa came from New York to visit over the weekend. The girls had a great time and were sad to see them go this morning.

Jim, India and I got our flu shots on Sunday. It was insane -- thousands of (medically high risk) people standing for hours in packed stairwells at the medical clinic. There were elderly women holding on to one another and folks with walkers, just standing, standing, standing. And it was disorganized, people were angry and fighting about their respective places in the line. At the time we were there it seemed like about a 2 1/2 hour wait for a shot. I can't imagine what went wrong logistically, but it was seriously frightening.

With the concentration of people and lack of ventilation, I am sure that it was one of the most dangerous places we've had Dayssi in the past six weeks. After waiting for about 45 minutes, someone, whose voice I did not remotely recognize, opened my mouth and asked a health care worker with a badge to help us get Dayssi out of there. We were moved to the front of the line.

Tonight is my last night of teaching. Fantastic students, as usual, and I will miss the weekly dose of their intelligence, idealism, charisma, and love of life! It has been a breath of fresh air.

More on Giving Blood

Our super-hero friend Jennifer once ran a bone marrow drive and tells us that the Red Cross is a great way to go for giving blood because you can also be included in the National Marrow Donor Program (NMDP). Bone marrow transplant is the treatment of last resort for leukemia kids (usually not necessary if chemo does the trick), so with any luck Dayssi will never need one. But there are many, many kids (and adults) with leukemia who do.

Here are links to the red cross.

HYPERLINK http://www.marrow.org/ http://www.marrow.org/
HYPERLINK http://www.redcross.org/ http://www.redcross.org/

Thanks J!

TO GIVE BLOOD

A number of you have expressed an interest in giving blood. To make this a little easier here is a website that lists the locations of local blood mobiles this month (San Francisco Bay area).

http://membersforlife.org/stanford/mobilesch/search.php

You can also schedule a time to donate at the Stanford blood center (see above site), or, I assume, at your local medical school.

Thank you.
Deb

Crash

Dayssi's counts have officially crashed. We went to the clinic for her weekly blood work this morning and I could see the nurses expected it. "She looks pretty pale," sang the nurse as she led us into the exam room. And she does. She has what the nurses affectionately call "white lips," which refers to the monotone grey of an anemic child's face. They called me an hour after labs with the results. Practically no hemoglobin, and so few white blood cells that they don't even count the neutrophils (infection fighters). I think that qualifies as an ANC of zero. Her platelets are still in the ok zone.

So what do you do when your kid is grey, with blood that is less useful to the body than beer? Transfusion. We went back in to the hospital around 1:00 and they gave Dayssi a big bag of blood. "We're going to make you pink!" exclaimed the transfusion nurse. And, they did. By the time we left, at 5:00pm, Dayssi's lips were red and her cheeks had a little flush going. She looks better. And it really perked her up, although I hadn't really noticed that she was flagging. The nurse told me that if one of us (meaning, an adult) had hemoglobin as low as Dayssi's we wouldn't even be able to stand up. Meanwhile, Dayssi went to dance class this morning before we learned the results of her labs.

So that's where we are. Still no fevers, thank goodness.

Tonight Dayssi will eat the final trace of delayed intensification, the one thiaguanine pill remaining in the bottle. She ate dinner late so I'll have to wake her to give it. Then we start two weeks off therapy. I don't know how long a blood transfusion lasts, but I doubt this one will carry her through the next two weeks. So I suspect there'll be at least one more. And her platelets could still crash, which would require their own transfusion. Dayssi also had two transfusions when she was first diagnosed.

So many people have reached out to us in so many ways in the last six months, and we are very grateful. But for anyone who is still looking for a way to help, I have finally thought of something: donate blood.

Dayssi Turns 3

Great, great day.

Superstitious

I am starting to feel a little nervous about how well everything seems to be going. We gave Dayssi her last dose of Ara C for this week, this morning, and she is acting like she is perfectly fine, strong, healthy, like her body is not under any kind of attack. I know this is a ridiculous interpretation but we were expecting this past five weeks to be a lot worse than they have been. I don't know where Dayssi's counts are and one of these days we're going to get scary news on that front. But for now, thank you, she does not appear to be in any kind of imminent danger.

This feels like a reckless admission. Like I might actually be punished for wishful thinking, for failing to worry enough, for rejecting the gravity of our situation, or for forgetting to thank whomever is responsible for our current (relatively) good fortune. And I am puzzled by this kind of thinking, by me. Who exactly would punish me? Neither Jim nor I has any first hand experience with belief in God -- no one who raised us believes in any public or systematic way. Yet, I am finding it is nearly impossible to go through this experience without looking up, on a regular basis, to ask why, or to say thanks, or to beg for help, or for mercy. It feels foolish to me, but I don't know what else to do. There is no one on this earth who can tell us why, or offer any promises. But this does not stop me from wanting them.

Another Quick One

Chugging along. Dayssi spent a big day at the hospital today (10am until 7:45 pm) starting the second half of delayed intensification, which involved administration of four chemo drugs, one in the spine under general anesthesia, the other three of which are new. It is my understanding that one of them (the dreaded Ara C shot, which it turns out does not have to be given as a shot) is really hard on the stomach, and that we are likely to have some vomiting over the next two weeks. Many families tell us also that anyone who had hair up until this point tends to lose all of it now.

But today Dayssi did great and she went to bed tonight feeling fine. We decided to leave her port accessed for the next four days so that we could administer the Ara C intravenously without poking her. And actually, they did the first dose for us in clinic today, we'll do two at home this week, and they'll do the fourth at the hospital on Saturday, before de-accessing her (taking out the line). Same drill for next week. So, as long as she doesn't dislodge the thing while she has it in, and as long as we are careful about keeping everything sterile, this should be easier for all of us.

Up for Air

We are still here. Got through our joint teaching and Dayssi's first 3 weeks of delayed intensification in one piece. We had lots of extra help, including Grandma, our hero, who toughed it out on a futon mattress every night because the girls wanted to sleep with her. She also brought a couple of gifts, invented new games (e.g., tennis in the trampoline), walked India to school every day, babysat on Saturday so that Jim and I could go to a friends' BBQ and actually relax there, and, on top of everything else, made it look like she was enjoying herself.

Dayssi is swollen from the steroids, and her hair is falling out in clumps, but today was her last dose in this phase and we are relieved, like last time, that the course of drugs has ended without any major explosions. The dose of steroids was higher this time, and Dayssi was even hungrier, eating around the clock and, on occasion, waking at night for a snack. We had dinner the other night at our friend Liz's house, and she took in the feeding frenzy with big eyes. Liz was ready for anything and responded with her characteristic grace and generosity, but she finally let a few chuckles slip when, after having enthusiastically devoured two eggs, toast with butter, cantaloupe and avocado before dinner, Dayssi announced that she was "starving" for the homemade pizza she helped to make. Dayssi seems more self conscious this time about the changes in her appearance, I am sad to report, but otherwise her mood has been good. She is full of hugs and kisses and proclamations of adoration, for anyone who will receive them. What an amazing gift she is.

India is thriving. Today is picture day at school and we got up extra early to do some primping. She chose her outfit -- the blue dress that Granny sent recently -- and took a shower to calm her curls. She feels beautiful today, as she does most days, and as she should. I hope she can always see herself through such loving eyes.

I am emotional after all of that teaching. It is hard work pretending that everything is fabulous.

BUSY!

Just a quick note to say that Dayssi is hanging in there. Jim and I are teaching 6-hours a day this week, until Friday, with a few hours off in between to fight fires, but it doesn't leave time for much else.

We are in our third week of delayed intensification already -- next Tuesday Dayssi goes off chemo for a week. She has tolerated everything very well so far, no complications, no surprises, but she is really wiped out. Her little body is so weary, but her big ole' spirit is indomitable. These big long doses of steroids are really tough.

Although Dayssi won't receive any chemo, we were told that we have a 50% chance of being admitted to the hospital in the next week or two, which is when her body will receive the full impact of the past three weeks. Yikes. So we'll be laying low for a while.

Symmetry

Tonight Dayssi gave Daddy his pills. And he gave Dayssi her pills.

Taking turns makes everything so much easier. What my colleague and friend Vic Vroom calls “the West Point theory of leadership”

Daddy even made a face, as if his were as nasty tasting as the dexamethasone. In fact, the Lipitor probably is, but daddy has his technique down, though Dayssi is giving him a run for his money. He also has the added advantage of chasing the medicine with daddy juice rather than bubba.

We are now having a snack of rice crackers.

Dayssi says, “Daddy, I love you” (Something we hear quite a bit lately – she loves the response it elicits). She continues, “Daddy, Grandma is coming over soon. India is going to ask grandma if she can sleep with her. Grandma may say ‘Yes’ or ‘No.’ She might say, ‘Sleep with Dayssi.’”

“What else?” I ask.

“Nothing else" says Dayssi .

“Are you sure?”

Nodding she answers, “Uh huh”

She takes a pen off the desk and announces, “Daddy this is your light saber!”

We are off to battle the forces of evil.

“Turn off the computer” she commands… and I do.

So Far So Good

Dayssi had her PEG asparaginase on Friday without any allergic reaction. It wasn't fun, getting two shots in the thighs at once, especially when she is so unaccustomed to being hurt at the hospital! It is amazing how well they do with keeping these kids from hurting. It really takes the edge off the whole experience, for everyone. Dayssi has told me twice since Friday that she never wants to have pokes in the legs again. I've told her that I don't think she'll have to, which is true, I think, as long as everything continues to go well.

We also shared a room during this experience with a little 5-year old girl who was getting chemo for some other kind of disease that gives her terrible-looking lesions all over her skin. She was very friendly, offering to share her portable DVD player and her toys. And her mom offered us snacks and tea. But Dayssi and I were both a little freaked. I tried hard not to show it but, for the first time I think since this whole business started -- and we are around very sick children a lot -- I felt like I wanted to get Dayssi as far away from this child as I could. I am still so ashamed for feeling that way; maybe it is because I think Dayssi is so vulnerable right now. Probably it is because what the little girl's mom told me was so frightening -- such a threat to my need to believe that when we finish treatment this will be over -- that I didn't even want to witness the possibility. The little girl's mom told me that her daughter had leukemia too and only developed this other disease afterward.

She got something else, equally serious, afterward???? That has to be a major violation of some kind of karma. Although I did see on an A.L.L. email list recently that one mom has two kids with leukemia. Some families on the list have a child with leukemia and a parent with some other kind of cancer. This little girl, in her treatment for T-cell leukemia, had to endure 40 shots of PEG asparaginase (we have 2 in our protocol), after which she got another life threatening disease. And I wonder, under what set of beliefs about God and the logic of the universe can these happenings be justified? It is all just so wrong.

Dayssi, amazing as usual, gave this child a good long stare, but she knew somehow not to make a big deal of the "bumps." She was polite, if somewhat distracted, but I know it got to her too because as soon as the little girl left the room Dayssi climbed on to my lap and said, "Mommy, don't let me get those bumps." I told her I would try my hardest.

The steroids haven't really kicked in yet, although Dayssi is already showing a strong preference for salty foods and she is definitely acting, in cycles, both more subdued and a little more manic than usual. She is really tired too, napping twice a day when she can, and falling asleep before 7:00.

Today we took the girls' bikes across the road to a little park with bike paths on it and we had a picnic lunch over there. Normally I push Dayssi's trike with a handle that comes off the back because she doesn't really know how to ride. Today, for the first time, she got the wheels going around herself with the pedals and was thrilled to be her own motor. We need to work on the concept of steering though. When I told her to turn her arms in the direction she wants to go, she let go of the handle bars and pointed. At least it was in the right direction! We'll get there.

Delayed Intensification

We began delayed intensification yesterday, and it was a long day, but it went very smoothly. At 9:30 am Dayssi had her blood drawn, through her port. Didn't even flinch. She had a lumbar puncture (under anesthesia) scheduled for 12:30, so we went to the hospital pre school to kill some time. Dayssi played independently for about an hour with a doll house and the people in it, and I drew pictures of sea creatures with stencils and colored pencils. Very therapeutic, for me. Dayssi finally had her procedure two hours late at 2:30 (it was an incredibly busy day, probably because of the holiday weekend). Piece of cake. She showed absolutely no signs of stress about any of it. In fact, she fell asleep in the stroller watching TV in the waiting room at around 1:00, and stayed asleep until I put her down on the gurney inside the procedure room. When she woke, she looked around, asked to smell strawberries (they put scented oils into the mask) and went right back to sleep. After waking she had a couple of popsicles and a blueberry muffin (first meal of the day, at around 3:30), and had an echo cardio gram (graph? I don't know what the test is called; it is an untrasound of her heart). At 5:00 we were back in the clinic, they gave her a dose of vincristine, and then she was hooked up to an IV drip of a bright orange chemical that looks like anti-freeze. Doxorubicin. It can affect the heart, which explains the echo cardio thing. I have to admit it kind of freaked me out, watching that stuff go into her (most of the drugs so far have been clear), but she was nonplussed, lying with her head on my lap, making up songs ("Mom, I never heard that song before!") . We were home by 6:00 and started steroids again at dinner time. But now she can swallow pills, with juice, just like a grown up. Hallelujah! No more big bowls of foul tasting yogurt. She still takes the Xantac with yogurt, but that is a tiny amount and although she dislikes it, it does not bother her enough to resist.

So, we have Day 1 under our belts. Today Dayssi is tired and a little subdued, and we've upped the frequency of her anti-nausea medicine. But she seems ok.

While in clinic, our nurse practitioner walked me through the plan for the next 8 weeks. I won't report all of the details here, but suffice it to say, she is going to get hit pretty hard. After yesterday's big bang, she gets an intramuscular shot of PEG asparaginase, on Friday. We do steroids for 21 days, with vincristine and doxorubicin once a week for three weeks. Then she gets a week off, no chemo during week 4. Then, if and when her counts are high enough, she starts three new drugs: cyclophosphamide, thioguanine, and cytarabine. The last one is a shot that we give at home for 8 days, during weeks 5 and 6. She gets another intrathecal methotrexate in week 6, and then we get weeks 7 and 8 off, no chemo. Then, it appears that if all is well, we start maintenance.

Just explaining this is completely exhausting.

More on Cause and Effect

Last week we received the first of what will be a series of newsletters from the Northern California Childhood Leukemia Study at UC Berkeley. It reports what they are learning about the causes of childhood leukemia. In hopes that some of you will find it helpful, here is a quick summary of the findings.

The results I am going to report are based on comparisons of 1092 leukemia patients and their yolked partners, who are children born the same day in the same hospital who do not have leukemia. The families were studied over a 10 year period.

Women who ate more vegetables, fruits, and foods containing protein (specifically, beef and beans) in the year before pregnancy had a lower risk of having a child who develops leukemia. In the fruit and vegetable food groups, carrots, string beans, and cantaloupes show strong links to lowering the risk.

Kids who ate more hot dogs and cured meats were no more likely to get leukemia than kids who ate less. Fruits and fruit juices that contain vitamin C and or potassium (oranges, bananas) reduced the risk of leukemia, especially if consumed in first 2 years of life.

Both short term and long term breastfeeding lowered the risk of leukemia.

Children who spent more hours attending daycare had a lower risk of developing childhood leukemia. The earlier a child started, the longer a child attended, and the more children in the class, the lower the risk.

Use of indoor pesticides either before or after birth increased the risk of developing childhood leukemia.

Fathers who smoked in the months before pregnancy increased the risk, apparently by damaging sperm. Mothers smoking before pregnancy, during pregnancy, and during breastfeeding, did not have any effect (sorry, in my recent delerium I reported this finding incorrectly to some of you). But a substantially elevated risk was observed when both the father smoked before pregnancy and the mother smoked shortly after the child was born.

There were no childhood leukemia clusters in Northern California, meaning that region or neighborhood did not seem to have any association.

The researchers estimated that all of these factors -- diet, pesticides, and parental smoking combined -- could increase a child's risk of developing leukemia by 20% - 50%. This increase could account for about 1 to 2 cases per 100,000 children per year. Note however that known causes of childhood leukemia only acccount for 5% of the variance.

The study in which we are participants is looking specifically at the effects of magnetic fields and chemicals in the water.

On Saturday, when I received this newsletter, my reaction was to cart the the kids off to McDonalds for dinner. Cheeseburgers and fries, all around!! I even bought myself a Diet Coke and let the girls taste it (in their own little ketchup cups, of course, I am not that cynical about the germ connection in all of this). The girls could hardly contain their shock, and their delight. This was maybe Dayssi's third trip to McDonalds, in her 3 years of life. India, in contrast, has been there more often, as this was a favorite meeting place for the nannies and their charges for a while, before I pulled the plug on that party because -- I thought -- it was too unhealthy. But, India is ok. And Diet Coke was not even on the epidemiology survey. And most of the food at McDonalds hasn't been close enough to nature to have touched local water supplies, or even seen a pesticide.

Why so twisted? Because I feel like I am a flipping poster child for clean living, having done all of the "good" things (except for early day care) and none of the "bad" things, and for what?

On Sunday I straightened myself out and wrote "CANTALOUPE" on the grocery list.

In other news, Dayssi was especially adventurous today. This morning, unprompted, she said "I want to try the finger poke today." We've had the option of a finger poke, instead of a port access, on days when only blood was being drawn (no medications), but Dayssi has wanted to stick with what she konws. Today, she walked, no, ran in to the new lab (in new sneakers), smiled at the new technician, climbed up into the chair, stuck out her finger, and did not even flinch when she got pricked. The first finger didn't bleed enough so they had to prick again, and she happily volunteered another finger. Incredible. And it was actually a lot easier that the port thing, which takes all kinds of sterile prep beforehand.

Then, Dayssi had her first swimming lesson. She loved it. She grinned goofily throughout the whole thing, wearing goggles and little fins, ducking in and out of the water with teacher Louise close at and. She is not at all competent yet but she is totally relaxed in the water, ready for anything. And it was amazing to see India afterward, during her lesson, diving and swimming all around, and to remember that only two years ago she was where Dayssi is now, unable to keep herself afloat.

India asked to ride her bike to school today, and we did. She was fantastic, walked up the big hill without a single complaint, and smiled with the breeze in her hair the whole way down.

Dayssi's counts are decent today, 1400 (up from 680 last week). So that means we can go to a birthday party on Saturday and have some fun before starting delayed intensification. We start next Tuesday with a spinal procedure and intrathecal chemo. Friday she'll get a shot of PEG asparaginase, which is supposed to be a very effective drug but one that sometimes causes very severe allergic reactions. Afterward our weekly visits will include lots of new drugs. One big day --September 18 -- Dayssi will have two new drugs administered in clinic. It is the same day that Jim and I start teaching. So we'll run over to the hospital with her in between classes. Luckily there is a four-hour break.

India Loves Kindergarten

It has been a fantastic week for India. She loves kindergarten and her teachers, who are as warm, engaged, talented, and charismatic as they come. The activities are wonderful too -- for example, the teachers prepare a "news" letter for kids to bring home every day, and in it the kids report their own personal news, like, "Adam's grandparents are visiting. Haley's lizard died but she is getting a new fish." as well as class news, like "We danced in the theatre today!" On Day 2 of kindergarten, India reported in the news that her little sister has leukemia. Hello! The teacher called to make sure I was ok with reporting that announcement to the entire class on Day 2. Of course I said it was fine, so now everyone knows, which I think is a good thing. First, it is good for India to feel that her new friends and teachers really know her and what is going on in her life. She will be loved, accepted and supported at school despite this, and because of it, and both of those things are good from my point of view. We have written a follow-up note to explain leukemia to all of the families in India's class so that they'll know how to answer any questions this raises for their own kids. I am hopeful that the news will turn out to have been a positive development for all of us.

Dayssi is also doing fine. Her counts are low but you'd never know it. Her cold is lingering and the cough is making me anxious, but so far, no fevers, and she is full of vigor and vitality, so I think we are doing ok.

Meanwhile, I caught Dayssi's cold (I let my guard down for a second and let her feed me something, ugh!) so that has made me unhappy, especially since I just got over the other one. Truth is, I am just worn out this week. Depressed is more like it. I have had it with this regimen already, and we are only three months into it. I'm tired of the constant vigilance; it takes up at least 2/3 of my mental capacity: what medicines does Dayssi need today, is it the same ones as yesterday, at what times, when does she have to eat in order to get the medicine into her before bedtime? When she takes the pill at bedtime, it has to be taken at exactly the right time (not too early), no one else can touch it, and sometimes she wants to play with the pill or take it out of her mouth, and if she keeps it on her lips or gums too long it can give her blisters. Will she take the medicines, or will she resist? We haven't had any problem for weeks but you just never know. Every poop threatens an out of control diaper rash (although she is out of diapers completely, which I think should take care of that problem), especially the extra soft poops which seem to come frequently and at random, but the alternative is even worse, so the poops can't be too hard or we have to give her more poo-poo medicine right away. So there is lots of poop watching going on. And we've also been fighting yeast infections off and on, which I am constantly checking for. The relentless hand washing, slathering hands with Purell every time Dayssi touches something that other people touch, cleaning the pacifier every time it falls on the ground, watching to make sure that she and India are not sharing food or drinks. Cleaning India's hands every time she touches something germy, cleaning my hands after work, after putting in my contacts, after blowing my nose, after touching ANYTHING. Praying that the nannies are doing all of this too.

On the first day of kindergarten the teachers had set up a table with bowls of cheerios and string on it so that the kids could make edible necklaces, and my first thought was "Aacckk, germs!" When we picked India up from school Dayssi went right over to the bowls (which had been used all morning by 17 clean,adorable but germy kids) and almost got some; I had to stop her and she cried because she couldn't have any. The next day, India made a necklace just for Dayssi to make up for the previous day' disappointment, not realizing that this was just re-creating the same problem, and I had to take the necklace away, which disappointed both Dayssi and India (the fantastic teacher gave us a bag of clean cheerios just for Dayssi, so that helped a little). The plaque is accumulating on Dayssi's lower teeth again, already (apparently this is from the sugary medicines), although I am trying to stay on top of the tooth brushing and make sure it is being done effectively (anyone who has ever had a 2-year old knows what kind of fun we're having here). And I've been laying awake at night trying to figure out how to manage Dawn and Candy's schedules when I can't plan ahead: will Dayssi go to school on Monday, Wednesday and Friday in the fall, or will she be at home with low counts and exhaustion from the steroids? No way to tell. . . . it goes on and on, the decisions just keep coming, the list of dangers to watch out for is overwhelming, and I'm burned out. Not to mention the fact that I hate to even mention, which is that Dayssi is being treated for a life-threatening illness. It is actually life threatening. And at some level I am always aware of what that means, and that the illness could recur at any moment, and that the side -effects of the treatment can also be life threatening, but we have to do the treatment for 2 more years. And, starting next week, all of this agonizing will probably just get worse, as we start delayed intensification. Oh, yeah, and I'm supposed to be working.

Anyway, I'm playing hookey from work this week, trying to pretend I'm having a summer vacation (while Jim is at Yale for 10 days), taking naps, spending time with my friends whenever I can, and buying the girls fall clothes. It helps, but the truth is, I am crabby. I am tired of worrying. I want our old life back. I know I will find a way to get through this, and to buck up for what is coming, but right now I don't feel like trying.

So Long Summer

Dayssi's ANC was 1000 on Monday, just at the "normal" cutoff. We were expecting the counts to be higher but she was on steroids last week, and she has had a cold. So maybe that explains something. Who knows. The whole counts thing is a mystery to us, frankly. Anyway, Dayssi seems to feel strong and healthy, so we decided to squeeze in some relatively low germ-concentration end-of-summer adventures before school starts on Monday.

We took the girls to Bonfante Gardens on Wednesday, a kind of conservatory/amusement park with some water play areas (we use hand sanitizer after very ride), and today we went to the beach with Sharon, Cole, Edie and some other friends of theirs. Dayssi has finally discovered the beautiful collection of hats given to us by our friend Ann, whose daughter recently completed her leukemia treatment regime and is doing great. We haven't invested in many hats ourselves, partially because we were given this fabulous collection but also because Dayssi still has a bunch of hair. It is still falling out and it has gotten pretty thin, so we worry about sunburn on her head, but she has enough hair to wear it in little tiny pigtails (today she has four and she looks very funky, like a little rock star). Last night I came home with some new fall clothes for the girls and it prompted a fashion show, and the hats came out. Now Dayssi is hooked. This morning Dayssi picked out an adorable pink skull cap type thing for the beach --perfect, since we expected it to be cloudy and cold -- and then took off all of the rest of her clothes to run naked in and out of the surf. So it wasn't that cold, and I wasn't totally prepared. Anyway, I also forgot the camera, unfortunately, because the visuals were pretty fantastic. As usual, Dayssi and her antics captivated many on lookers. The child is just so full of life.

In other news, we had a long conversation with India's therapist this week. She thinks the emotional crisis has passed for India, for now, and wondered whether we might want to curtail our weekly visits since she doesn't feel they are necessary at this point. She reported observing some signs of stress initially, but reports that much of that seems to have resolved. She says India is a dream client for a play-therapist because she just dives into games and story telling while in the office and processes all kinds of emotional stuff through her play. From the very beginning she told us that India's play did involve stories in which sometimes scary, sad or bad things happened to people (often there was a sick child in the family who was getting all of the attention and the other children were left alone) but even at the beginning of therapy the resolution was always positive. According to Dr. Larsen, there are always protectors in India's stories who love and care for those who are sad or in danger, even if they are sometimes temporarily absent or unavailable, and the stories tend to end with everyone feeling loved, safe and secure. This is a big deal for the therapist, who said it suggests that India is fundamentally secure and that she believes everything will be ok -- the bottom has not dropped out for her. What a relief.

Enough about that. One day when she can read India is going to find this blog and I don't want to have reported too much that is too personal. I just wanted those of you who are feeling concerned for her, as we have, to know that she seems to be coming through this leukemia experience in one piece.

I am SO excited about kindergarten. I think India is going to love it. Strange, since apparently I hated kindergarten at first and had to be dragged crying into the school for at least several months. I remember complaining to my mom that there was a girl named Gina who took my crayons and pressed too hard. I did not know how to stop her. But India is India, and I am me. We will let you know how it goes.

Okey dokey

For those of you who start to anxious when a week goes by without a post, just want to reassure that all is well. Dayssi had labs this morning to check her counts, we'll hear about the result later today but we expect them to be relatively high at this point. Both girls have the sniffles but nothing is slowing anyone down. We had a fun busy weekend -- saw a horse show and went swimming yesterday with Liz, Reed and family. India swims self sufficiently and Dayssi is jumping off the board and swimming in the deep end with floaties, experimenting without floaties in the shallow water. She starts swim lessons in a few weeks (health permitting) and we are all very excited about that. The girls went to Great America on Saturday with Jim and our friend Christopher (aka "the toe eater"), so I had a few hours to lie around and DO NOTHING. Heavenly.

India starts kindergarten on Monday. It is hard to believe at one level but at another level, not hard at all. She is so ready. Yesterday when Liz called me in the morning and Jim and I were still in bed, India picked up the phone and carried on a conversation, telling Liz "Perhaps if you are in town today we could get together." At the time India took the call she was in the kitchen making breakfast for herself and Dayssi; the menu included toast with butter and orange juice with bubble water. During the preparations, Dayssi discovered a tupperware container with mini Tootsie pops inside, and when she showed India and asked, "Do you want one?" India said "No, I'm not going to have one, but you go ahead." Huh? India reported this story with pride, having respected our "dessert day" rule when Dayssi just couldn't, but I suspect this was also a set-up: she also likes the fact that she gets dessert today, on dessert day, but Dayssi doesn't, since she took candy when she wasn't supposed to.

The girls have no school this week so we're planning some end-of-summer adventures. We will keep you posted.

Overheard in the Ambulatory Procedure Unit

We are continuing to pound our way across this treatment terrain. Yesterday Dayssi had a spinal puncture to inject methotrexate and it was pretty uneventful. I am especially appreciative of just how uneventful having spent a week sharing a hospital room with an adorable 13-year old girl who gets methotrexate intravenously as an in-patient and then spends the entire night vomiting. Anyway, yesterday was kind of fun for Dayssi. Everyone in the surgical prep and recovery areas knows us and LOVES her. The nurses fight over who gets assigned to her and the anesthesiologist told me several times yesterday that he didn't want to put her to sleep so that he could spend more time playing with her!

Yesterday was our first time with a late afternoon procedure time and it was . . . different. There were a lot of teenagers with us in the prep and recovery areas. I think they might schedule the teens later because you have to fast all day before surgery, starting at midnight the night before, and it is really hard for the littler ones to go until 3:00 or 4:00 in the afternoon. We've been pretty lucky,usually pulling an early morning slot but yesterday we pulled a long straw (Dayssi did ok, she hardly complained and seemed satisfied to talk about all of the things she could eat after her "test").

Most of the teens were insolent, they were scared but not wanting to show it, either sullen and uncommunicative or complaining loudly about everything that was happening to them (rightfully so). But it kind of took the wind out of their sails to see Dayssi among them, perched up on her guerney, singing and giggling to herself, blowing kisses to the doctors and nurses, lining up her stuffed animals and finally shouting " c'mon guys, here we goooo!" and then waving graciously like she was on a parade float as the doctors wheeled her out to her procedure. The parents were laughing their heads off at the contrast, which seemed to irritate the teens even more.

The angst of teen life was so poignant in this context. There was a boy with braces, wearing a headband and a puka shell necklace (they took the necklace before surgery but let him keep the headband) trying so hard to look cool but clearly freaked out by the process of getting his IV line in (they were having hard time finding a good vein). He was cursing and grimacing, on occasion almost crying, barking angrily at his mom (whom he banished from his bedside but would not let leave the room) and his grandmother, whom he allowed to stay next to him. As an aside, these women looked almost exactly like the Laura Dern and Diane Ladd characters from David Lynch's Wild at Heart. But my favorite teen moment from yesterday was a line I overheard in the recovery room. A 16-year old girl was wheeled in after plastic surgery to fix a broken nose and she was talking a blue streak as her anesthesia was wearing off. Among the funny things she said was this priceless remark, delivered with a California-girl lilt: "I guess I should be wondering where my mom is right now but I really don't care."

Flu season is kicking in already and it is freaking me out. Dawn was out last week, Candy is out this week, and I have a serious bug right now -- low-grade fever, aches, and a cough, since Wednesday!! I am just terrified that Dayssi is going to catch it and the damn thing won't go away! I've been wearing a mask at home, washing my hands obsessively, hoping for the best. This is the last week of summer school for the girls (India's last week ever at BING!) so I'm hoping we'll escape without catching anything new there. We learned yesterday that in three weeks Dayssi will start "delayed intensification," which, as I understand it, is the last really intense period of chemotherapy before maintenance. She'll be getting daily injections, administered at home (yes, we have to do it ourselves), and her counts will crash, just in time for Jim and I to start our fall tandem teaching, when we will be totally unavailable all day every day for a week, while exposing ourselves to 240 fantastic new MBA students and their exotic germs from all over the world. No offense guys :-). The timing is just perfect.

Magical Thinking

I've been hung up lately on why and how we got leukemia. It's shocking really how little time and energy Jim and I have put into this question so far. The doctors at diagnosis told us something like "the etiology is very complex, there'll never be a single cause identified, we know very little about what causes childhood leukemia, but don't worry, it is nothing you did." Hmm. It says a lot about one's state of mind at the time of diagnosis that this serves as a satisfactory explanation. In fact it has more or less held its own for 3 months.

But last week I was interviewed for three hours by researchers from the UC Berkeley school of public health as a participant in their study of the causes of childhood leukemia. The interview was unnerving in the end because of all of the possibilities it raised. What did I eat for the year before getting pregnant, during my pregnancy, and while breastfeeding? I literally had to estimate portion sizes and estimate weekly intake for every kind of food that you can imagine. There were lots of predictable questions about things like smoking and pesticides (which is my pet theory -- many of you have heard my rant about the gratuitous and irresponsible use of pesticides at Stanford West). No questions about microwave cooking or diet soda. Lots of questions about drinking water. There were lots of questions missing from the survey, things that I would have expected to be on there, and after the interview I lay awake at night thinking about some of them. I can hardly remember much of the interview, and now I can't really remember what I worried about the night afterward. I don't want to remember. Each possible cause reveals another way that we might be responsible.

I remember a few years ago when a neighbor's toddler died under mysterious circumstances how lots of us in the neighborhood, who cared and mourned deeply for the family, couldn't help generating explanations that had something to do with how the child was cared for -- we felt guilty for trying to blame them but almost couldn't stop ourselves. Believing that those parents did something we would NEVER do was the only way to make ourselves feel safe from suffering the same kind of horrible fate. So you can see where this leaves me now. Beneath the optimism, matter of factness and stiff upper lip with which I have tried to face this challenge, I carry guilt, sorrow and shame. It is not just that I think others might blame me even though they don't want to, but mostly I think I might blame me. What kind of parent, what kind of person, could have let this happen?

Here are some of my more magical musings on the subject . . .

I dreamt once, when Dayssi was an infant, that she fell into a deep pool of water and I dove in after her as quickly as I could, but never actually got my hands on her before waking in a cold sweat. I can still see her in that dream, falling slowly through the water in her purple and white flowered pajamas, with her hair flowing around her face, down, down down. When I woke my first thought was, oh my god, are we going to lose her? I had never had that kind of dream about India. But I reassured myself that it was just the normal anxiety of caring for two children at once; that I feared, like so many friends who'd just had their second child, that somehow I would lose track of Dayssi and something awful would happen to her. Since then that dream has come to pack a new punch. In Buddhism -- which I've always loved and on occasion tried to practice -- it is believed that we get back from the universe the kinds of visions and energy that we put into it. So maybe the dream wasn't prescient but productive. Did I make this happen by daring to imagine it?

More recently, after Dayssi's A.L.L diagnosis, I had another scary dream but it has been more of a comfort. I dreamt that Dayssi was standing on top of a large water pipe, as though she was at the base of a large dam, and waves started to crash against her from both sides. She was terrified and I couldn't reach her or even call out, but in my mind I begged her, hang on, hang on!! And she did. The waves subsided and she was still standing there, wet and scared, but clearly ok. So, if I can give her A.L.L. with my dreams, at least I can make her survive it the same way. Phew.

But the UC Berkeley researcher did not ask me about my dreams.

I asked Jim the other night -- do you ever think about what caused this? He looked up and said with utter calm and certainty "No. It's just a random mutation." Maybe so. But I don't know what is harder to live with: the possibility that we did this to Dayssi, or the possibility that we had nothing to do with it.

Counts up

Dayssi's ANC is over 1000 so we'll be starting chemotherapy again tonight. She will receive half her previous dosages this week and next Monday we are changing to another phase I think. There will be a lumbar puncture among other things. She'll be back at school soon as well.

Last night we took India to the urgent care because she injured herself climbing into a shopping cart (straddle injury is what the doctor's call it). She has a cut that needs antibiotic cream but is fine otherwise. I think both India and Dayssi were tickled that it was India's turn to go to the doctor. Dayssi watched quietly with a teeny tiny smile as India answered the doctor's questions, let him examine her, and peed in a cup. And India literally reveled in all of the concern and attention.

Dayssi has been determined to sleep without a pull up and did so succesfully last night, waking at 6:45 am and asking us to put on a diaper so that she could pee. Whatever.

Bumpy But Safe Landing

We are at home and all is well, medically speaking. Dayssi's counts are still down so we'll be laying low for the next week or so, hiding out from rogue germs. Dayssi was thrilled to leave the hospital but India is not sure she wants to give up any turf. Upon our arrival there were lots of fightin' words and some crying, but right now both girls are in their respective rooms quietly enjoying their space.

Our release was also kind of abrupt. After telling us that we wouldn't be released until after 1:00pm today, the nurses basically booted Candy and Dayssi out of the hospital room at around 11:45 today. Poor Candy had to pack our room by herself (I was leisurely retrieving India from school) and wait for me with Dayssi and all of our stuff in the family kitchen for over an hour. Kinda rude if you ask me. But then, no one asked (:-)

Crafty Dayssi and the M&M's

Seems to me that Dayssi is pretty much back to her old self. While Deb and India were up in the playroom, she alternately cajoled and berated me into getting her a “treat.” These were M&Ms -- and the new white chocolate kind no less. Then she proceeded to ration them out one at a time, but roughly in the proportion of “5 for me and 1 for Daddy.” When I protested, she frowned and suggested, in not so many words, that I was lucky to be getting any. Trying my hand at what I imagine to be child psychology, I sulked a bit. This got me a hug, a crafty smile, and an “I love you,” but no M&Ms. A little later Dayssi taunted me by sticking out her tongue with an M&M on it and daring me to try to snatch it with my tongue, but knowing I couldn’t because of the possible exchange of germs – though I don’t suppose she was thinking very much about directionality…. She’s clever that little one. But just wait until her ANC goes back up, I’ll slurp those M&M’s off her tongue faster than she can charm an oncology fellow.

On the mend

Dayssi has not had any fever for over 24 hours and they are trying to send us home! Her ANC needs to hit 500 for us to get sprung. This morning she is back at 360 after bottoming out (we hope) at 220 yesterday. We took a chest x-ray this morning and that will have to look good also; we haven't heard yet about the result. But everyone assumes that the infection is under control and it is just a matter of waiting for her immune system to bounce back.

Thanks for the support!

A little pneumonia

This will be quick -- Dayssi was admitted to the hospital on Saturday afternoon with a little pneumonia. I say "a little" because the doctors are not terribly concerned about it. It is a very small infection in the right lobe of her lung. She woke up with a fever on Saturday, no other symptoms, and the doctor hesitated before asking us to bring her in to the ER because her counts were so high on Wednesday. It is a good thing we did because a chest x-ray revealed the pneumonia and we were able to get a jump on treating it. And, Dayssi's ANC plunged from 2800 (normal range) on Wednesday to 800 (just below normal) on Saturday, to 300 (!) (neutropenic) on Sunday. It appears to be a normal dip in the chemotherapy cycle but it is kind of startling how fast it can drop. Dayssi is off chemo until her ANC comes back up to 75o. This morning she was at 360.

Dayssi feels and looks great, and none of us are terribly stressed at the moment. The doctors and nurses chuckle and look perplexed at how perfectly healthy she seems. She's taking 3 intravenous antibiotics and they seem to be helping -- already she is coughing a little, a sign that the infection is loosening up.

Not sure when we'll be released, no one has even mentioned it yet. I think she has to go for at least a day without fever and they'll probably do another chest x-ray beforehand. We will keep you posted.

Skin in the game

I don't know how many people are reading this blog, but I suspect that only a few of you will appreciate the significance of these photos. For those who are incredulous, there is nothing wrong with your eyes. That is Deb riding on a roller coaster.

For those of you without context for the meaning of this event, suffice it to say that only 10 minutes before this shot was taken, I said to Jim that I would not ride on any roller coaster, ever, and that I would be perfectly happy to go to my grave without ever having done so. I'm a big chicken when it comes to dropping, falling, swinging, racing, flying or anything else that is designed to create the sensation of your body leaving your soul. I've been, off and on, a frightened flier -- some of you might remember the story of how I threw my arms around a stranger and cursed in his ear while landing a small plane in Bozeman Montana during a thunder storm.

Those of you who know Jim well will appreciate the irony of his having chosen to spend his life with someone like me. Jim has a serious need for speed and he likes to induce terror, thankfully, mostly in himself, although lately the squirrels (and a now deceased king snake) who think they live on our property have fallen prey to his wrath. Jim has always thought of my distaste for amusement parks as a kind of minor character flaw, and one that, with the right kind of encouragement, could be corrected.

Until Saturday I was sure he was out of his mind. And then, while standing with my family, who were waiting in line to ride the kiddie roller coaster at Great America, with my girls jumping up and down in anticipation, and begging me to go with them, all of that changed. What right do I have, I reasoned, to refuse to do something that scares me, when I ask my 2 1/2 year old every week to come with me to the hospital and cooperate while strangers (now mostly friends) poke and prod her, give her poisons, make her wear masks and breathe sleepy air, and draw blood from her chest while she is watching? The least I can do is get my ass into the seat next to her on the damn kiddy roller coaster!

As you can see from the photo, I was definitely scared. But it was fun, even worth it, perhaps, given how I've felt since. It is one of the only beautiful things about having a child diagnosed with cancer that you get a chance to revisit how you are living your own life and put some more skin in the game.

On the day Dayssi was diagnosed with A.L.L. and we were admitted to the pediatric oncology ward, I bumped into an acquaintance whose child also has cancer, who happened to be in a room down the hall. When I told her about Dayssi she looked at me with tears in her eyes and told me that there are wonderful things that can come out of this journey. Even at that moment I understood that what she was saying had to be true. When your child is diagnosed with cancer, you feel trapped, forced into a house of horrors with no doors or windows. At the same time, you find yourself on occasion, in spite of yourself, feeling free. Priorities become clear. Self imposed responsibilities fall away effortlessly. You spend more time in the moment, loving and being loved by family and friends, and less time thinking about where you have to be next. You take your kids to the fireworks even though it might be too loud, and you might have them out too late. You have breakfast with your husband even though work is waiting. You take your own health and well being seriously because, for the first time, they seem important. And you ride the roller coaster.

Interim Maintenance

We began Interim Maintenance today, without a hitch. Dayssi's counts were high enough to give her new doses of old chemos plus starting her on new drugs. We don't know exactly what her counts are -- the nurse forgot to give us our copy of the labs. We know Dayssi's ANC is above 750 or we wouldn't have started new chemo medications today. But it is probably below 1000. So, continuing to fall, below what is considered normal, but not yet neutropenic.

While at the "hostibal," Dayssi acted thrilled to see her friends the nurses -- she was silly and super outgoing with everyone in sight, including Rita, the hospital's well-trained pet dog, Rita's trainer, and a little girl in the next room who was feverish and had come in to receive IV fluids. Dayssi played chase with Dr. Dahl in the clinic, giggling and galloping after him as he pretended to run away from her. We didn't have an official appointment with him today but he stopped and visited with us for a while, was happy to see her looking so well, and said he could not imagine how she has kept so much hair. She has lost a lot at this point, but, as many of you will recall, she had a ton to begin with. Our friend Karen sent us pictures today that were taken in April, just a month before the diagnosis. Dayssi's hair really was a sight to behold. Anyway, she was chatty and playful for the entire visit, even as her beloved nurse Kim administered the chemo to her port and then proceeded to remove the big bunch of bandages and the access needle that was stuck in there yesterday and left in overnight so that she wouldn't have to be poked again today. Dayssi usually hates having tapes and bandages removed, and I have to hold down her hands and feet while she tries to fight off whoever is working on her. Today, as usual, she was dreading being de-accessed (she said on the way over, "I think we'll just leave it in today, mommy"). But after we got to the clinic, Dayssi walked over to Kim and sat with her while I talked to our nurse practitioner, Tamara, about all of the new medications. As I glanced over my shoulder I could see Dayssi "helping" Kim, pushing the chemo into her PORT with her own little hands, and helping to hold up her shirt, pull off the bandages, and remove the needle without a whimper. I did hear this much of their dialogue:
Dayssi: "Are you going to take that out?"
Kim: "Yep, in just a minute."
Dayssi: "I'm scared!"
Kim: "You are? But you don't really want to run around with this in here all the time, do you? If we take it out then you can take a big bubble bath and go swimming. We're almost done!"
Dayssi: "Then I'll be FREE!"

It was quite the smorgasbord of drugs today. Dayssi received a push of vincristine (this is the drug that makes her jaw hurt, and her tummy hurt, for a few days after getting it, and it also makes her walk and run kind of funny). After returning home, we started a five-day course of steroids (dexamethasone, the original and still worst "yucky" medicine), plus the minty Zantac that goes with it (another contender for most yucky), and a new oral methotrexate, which Dayssi will take one night per week for the next two years. The methotrexate dose consists of 5 small pills, and also requires an empty stomach. So, after returning from the hospital, Dayssi had a drink with extra poo poo medicine (to stave off another undesirable effect of vincristine), dinner (Tacos!), some yogurt with steroids (dexamethasone), Zantac and grenadine. An hour later she had the 5 methotrexate pills, which she took by carefully placing each inside its own raspberry, popping into her mouth, chewing and, on occasion, swallowing without even feeling the pill! Piece of cake. An hour later, she had her regular 6MP pill, which she'll continue to take every night at bedtime for the next 2 years. This is the one that makes her throw up every morning but she doesn't know that, and doesn't mind taking it.

We were pretty stressed about all of the changes, but Dayssi was not. There was little struggle at all this evening. The hardest part was the steroids, but we discovered yet another innovation that seemed to help: Dayssi took the yogurt with a Tic Tac in her mouth, and enjoyed the challenge of trying to swallow the yogurt while keeping the Tic Tac on her tongue. In a few days, when Dayssi's jaw is aching and her tummy is hurting, it is going to be hard to get that yogurt into her. But we've done it before, and it is only 5 days on yogurt this month. Next month we'll have another 5 days.

India saw her therapist today and we think it went well. We spent about 10 minutes altogether in the office and then Dr. Larsen asked India if it was ok for me to leave them alone. She looked at the two of us like she thought that was kind of a fun idea, so I left them alone. At the end of the session, when I rejoined them, Dr. Larsen reported that she and India agreed it would be good for India to come and visit again. Score! So we're going back on Monday. India also started her new Capoeira class (Brazilian dance/martial arts) on Tuesday, and she really liked it although I thought it looked hard! She did complain afterward about her arms and legs hurting. But she is eager to go back.

Party girls

All is well. Jim's 2-week executive ed program for non-profit leaders in the arts ends tomorrow. It will be nice to see him again (:-). It seems to have gone well, as usual, and I even managed to squeak out a couple of days of teaching, as though things are back to normal. It was good to throw myself into work but was also somewhat surreal, watching myself act like a professional who isn't thinking about her kids 24 hours a day.

The girls are doing fine. Dayssi is sleeping in her own bed and, with the exception of last night, when Jim heard talking and found her sitting in her chair with a book at 2:30am, she has been sleeping through the night. India is waking off and on, calling "mama mama mama" in a panic, but then she falls back to sleep without much coaxing and doesn't seem to remember waking up or having had any nightmares. Being the sleep freak that I am, I attribute these night terrors more to exhaustion than anything else and I suspect that once I can get the girls to bed earlier again that this problem will resolve.

We've had a lot of late nights as we are taking advantage of every possible opportunity to party while Dayssi's counts are good and she is feeling healthy. The fireworks were a lot of fun, although they didn't start until 9:45 pm and we didn't get home until 11:00pm. We heard the New Orleans Preservation Band play jazz for a few hours beforehand and enjoyed watching Dayssi entertain the crowd by dancing animatedly on my lap while facing those sitting behind us whowere, on occasion, in tears from the hilarity of it. The next night, on July 4, we attended a barbeque at Liz and Reed's, which also ran a little late as we couldn't bring ourselves to separate from them. We are, as I like to say to the girls, ka-pooped!

I met with India's prospective therapist yesterday and she suggested that while many of India's current behavioral quirks might be attributable to her responses to Dayssi's illness and its ramifications, many are also developmentally appropriate, and some are consistent with sleep deprivation. I think I've mentioned before how difficult it has been to get the girls in bed at a reasonable hour these days, especially with the 6MP which has to be given at bedtime, but 2 hours after eating or drinking. It gets late. Next week India and I will go together and India will get to meet Dr. Larson. I'm looking forward to hearing the assessments of both parties and am going to feel very relieved to have the support of such a warm and experienced professional.

On Friday Dayssi has her first dentist appointment with a dentist who specializes in children with health problems. She'll be taking a big dose of antibiotics before the cleaning. We've received a couple of mailings from the dentist already to prepare Dayssi emotionally for the visit, and at some point soon we are supposed to receive a Dentosaurus book in which, among other things, she gets to record each of her visits. I hear there are lots of toys and other distractions at this office, including a DVD screen ABOVE THE CHAIR where she'll have her cleaning. Shouldn't all dentists have that??

We start Phase III of Dayssi's treatment (interim maintenance?) on Tuesday of next week. Jim checked the protocol and he thinks we'll stay on the 6MP pills for this phase, and introduce an oral methotrexate once per week. This will be confirmed by our nurse practitioner later today. Dayssi's counts are still decent -- her ANC (indicator of immune system strength) was 1600 last week, which is still within the normal range, but is also way down from about 5000 the previous week. So we are headed downward, as expected, because the chemo is taking out her immune system. It makes us anxious to move into this territory but it is par for the course. Soon we'll be washing hands obsessively again and keeping Dayssi away from crowds. And we'll be hoping to keep the serious infections at bay.

Cold Beach

This morning we went to the beach with Sharon, Jim, Cole and Edie. It was a little colder than we expected at 8:30am, which was a bit of a bummer, but it was NOT sunny, which was a plus. We had three kites in the air at once and there was lots of digging going on. As you can see, it was quite a love fest.

Tomorrow afternoon, Dayssi has labs, but NO procedure on Tuesday as far as we know. And tomorrow night, fireworks! We've never been -- it has always seemed too late and too loud for our us (probably just for me actually) -- but this is our year. The girls are beside themselves with antipation. Stay tuned.

So Happy Together

India and Dayssi have been bonding of late. Here are some pics from thier sleepovers and first day at school together.

Growing up, despite everything

Not much to report from the front lines these days. Dayssi has completed her course of antibiotics and she appears to feel great. We've read that kids with cancer tend to regress, and we've had some of that (we're back to using a pacifier full time) but we are encouraged byDayssi's recent reaching for developmental milestones. Without any suggestion from us she has decided to start working on potty training, and she woke up one day last week and announced that she was ready for a big girl bed. We've made progress on both counts. Dayssi hasn't worn an actual diaper for over a week now and she alternates between underwear and pull ups, using the potty successfully during the day and actually waking sometimes to go during naps. We've rearranged her room so that it now contains a crib and a big girl bed, and although she hasn't yet slept in the bed she is, finally, back in her crib. Since returning from the hospital in May we were letting her sleep with us (I can hear all of you who remember my sleep-training obsession howling out there) but as of last night we have our own bed back. We miss her little soft warm body in there but do not miss sleeping with her scratchy tulle ballet skirts (which she has been wearing all day every day and most nights). India helped with the transition, offering to sleep in the new bed in Dayssi's room with Dayssi in the crib. It was a real joy to see them comfort one another last night; they both seemed to love being in the same room and nodded off peacefully facing one another. It was the easiest bedtime since Dayssi came home from the hospital. And, the girls played so much and so nicely together this weekend that I was reluctant to leave the house! We are still waiting for parts of the bed apparatus -- there is an actual frame coming from Ikea and a very romantic princess net as well. We've been working on India's room too -- recently hung some new art work, got a new duvet and sheets, and made some new space for a little desk and chair which she won't need for a while but which she thinks are very cool and grown up. We'll try to send pictures soon.

India is still fragile and stressed. She is overtired, and she is anxious; she now knows what the word anxious means and uses it correctly, often. She has been waking up at night terrified, insists she does not want to go to kindergarten (has she ever said that she didn't want to do anything before?) and has been fixated on recounting an unfortunate incident from our past (over a year ago) when she got stuck in an elevator by herself. We've talked with our pediatrician about India and how best to help her, and we now have the names of a few counselors who specialize in treating siblings of young cancer patients. The other night when we were talking about her feelings I told her that when daddy and I feel anxious we sometimes see a special doctor who takes care of people's feelings and I asked her if she would like to see a doctor like that. She smiled and nodded. So this will be a new adventure for India starting soon.

Tomorrow we have a spinal procedure scheduled to inject some more chemo into Dayssi. It is the third weekly spinal procedure since we started phase 2 of treatment, and after this one we get a break for a while. It is a grisly procedure when you think about it but she sleeps through them and does not seem to be aware of them, only worries about the band-aids that mysteriously appear on her back and when they will have to come off. There'll be some new challenge, drug wise, coming soon I'm sure, but for now we are enjoying the relative ease of familiar drugs adminstered at familiar times that evoke little resistance.