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.
Monday, August 28, 2006
Thursday, August 24, 2006
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.
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.
Friday, August 18, 2006
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.
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.
Monday, August 14, 2006
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.
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.
Tuesday, August 08, 2006
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.
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.
Sunday, August 06, 2006
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.
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.
Wednesday, August 02, 2006
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.
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.
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