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.