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.