Saving Miss Dayssi: Update

New Family Blog

2010-04-22T19:40:00.000-07:00

We just launched a new blog called Thinkfit Family Fitness. Check it out. Thinkfit Family Fitness

First Day of School

2009-08-25T11:29:00.000-07:00

Dayssi and her 1st grade teacher, Miss Ginna

Dayssi Swim Champion

2009-07-07T21:09:00.001-07:00

Dayssi celebrates after her blue ribbon in the 25m freestyle event

Jeja Dayssi and India and the quest for Hap Ki Do

2009-02-03T15:32:00.000-08:00

Last night India and Dayssi completed their "Quests" and received orange belts.

More Soccer Pictures

2008-09-21T20:46:00.001-07:00

PS: India scored a hatrick in this week's game (that is 3 goals for you neophytes)

Soccer Mom and the Superstars

2008-09-21T20:38:00.000-07:00

It's soccer season an India and Dayssi have taken to the field. Mom was on snack duty last week and did a fabulous job... gotta have the sliced oranges.

Bigger and Better Things

2008-08-26T21:17:00.001-07:00

Yesterday was Dayssi's first monthly check-up since going off therapy. Her blood looks perfect and so does the rest of her! She does have a bit of a rash on her upper body, which started in Hawaii the week we stopped giving chemo pills, and got pretty interesting for a week or so; it is dying down now. Apparently most kids get this rash post treatment -- no one knows why. But it is good to know that it is normal, not unusual, not indicative of anything we should worry about, so we can just ride it out.

Turns out we will not have any more LPs this year, contrary to what we were originally told. Dr. Dahl reports that all of the ruckus we made earlier this year prompted him to look at the data before requiring us to do the LPs, and the docs all decided that they are not learning anything useful from doing the extra LPs. So, one (well actually four) less thing(s) to worry about.

Today was Dayssi's first day of kindergarten, and it was a success. She made a new "best friend" whose name she can't remember, and came out of the classroom jumping, dancing and talking a hundred miles an hour. India's first day of 2nd grade was also fantastic. She loves her two new teachers and has lots of friends in her class. She said tonight "I"ll bet tomorrow will be even better." I want some of what she is having.

We'll update next month after Dayssi's check up, unless something really blog-worthy happens in the meantime, like good pictures of a soccer match, or something.

No Mo Na-Na

2008-07-28T22:31:00.001-07:00

Talk about your major milestones -- finishing treatment for leukemia was pretty big, but it pales in comparison to what happened today: Dayssi took all of her na-nas to the hospital in a little plastic baggie and gave them away, just handed them out like presents to all of her favorite people, with a big smile, just like that. She asked only once this afternoon if she could use one when she got home, and then just grinned when I reminded her that they were all gone and that she was done with them. After dinner she crashed on the couch while watching Peter Pan with India (who finds out tomorrow what role she will play in her musical theatre camp's production of Peter Pan -- more on that later). I put her in bed and haven't heard a peep.

Dayssi had her first na-na at 10 months -- which is kind of late to start -- and she was instantly hooked. I have dreaded this day ever since. But now that it has come and almost gone (seven hours until morning) without incident, all I can say is: Thank you G*d for creating the na-na, and for guiding my child to it when you did. It has gotten us through so . . . much . . . crap.

Thank you also for giving us the strength and the wisdom to let her keep using it, until she was almost 5, despite the obnoxious gratuitous comments of many many complete strangers who have felt compelled to tell her that she should take it out of her mouth because pacifiers are for babies. Who are these freaking people, and why are they bothered by Dayssi's pacifier??

Anyway, our love affair with the ubiquitous na-na appears to be over. On to bigger and better things.

Aloha & Mahalo

2008-07-23T21:35:00.000-07:00

We just got back from a fabulous week in Hawaii. Fun, sun and surf abounded.

See for yourself

No Mo Chemo

2008-07-19T18:16:00.000-07:00

Dayssi is officially finished taking chemotherapy. She has a final bone marrow aspiration and lumbar puncture to examine spinal fluid next week. We'll update again then.

Waiting to exhale.

final steroids

2008-06-22T13:58:00.000-07:00

Dayssi took her last dose of steroids yesterday. Hallelujah. She's had two 30-day courses and 2 and a half years of 5-day courses, once per month. They make her depressed, angry, whiney, physically aggressive (pushy, punchy, slappy), unable to sleep through the night and, as you'll recall from our early posts, hungry all the time but only for very particular things. We are wondering how much the new, steroid-free Dayssi will resemble Dayssi on steroids. Whether she is really that demanding, that stubborn, that picky, that physical. I assume her charm, her affection, her drive and sense of humor, and her tendency to ponder the big questions in life are not drug induced. We are about to find out.

I actually cried as I was getting the last dose together, realizing how much I absolutely hate this drug in particular, not to mention the relentless regimen of remembering to administer all of these medicines, how much energy I have spent over the past two and a half years bracing myself for the steroid week, which coincides with the vincristine week and, every third month, the spinal methotrexate week, wondering how I was going to remember to give her all of her medicines at the right times and when the side effects would manifest, whether Dayssi would go to school or not, whether her legs would ache, her tummy would hurt, or her bowels would shut down, and the guilt: of caring or at least acting like I cared about anything else, of leaving her at home when she felt under the weather, to do anything but especially, to go to work. These are things I am not going to miss.

Jim and I tried to rally some excitement around the last dose of steroids. The girls looked shell-shocked. Dayssi did not want us to document the final dose taking on camera -- in fact she refused to take the medicine until the camera had been put away (remember, she had been on steroids for five days at that point). She does not remember that they were awful for her in the beginning, and for many months -- before she learned how to take a pill, when she had to choke them down in disgusting liquid form. She doesn't know about the AVN that can be a very serious side effect (especially in older kids) -- the steroids actually block blood flow to the joints, and the bones just die and disintegrate, never to grow back. I don't think she associates any of the side effects she has visibly experienced with the drugs, although she has learned to make quite a sport of asking for special foods at special times "because I am on steroids." She knows, I am sure, that this source of her current power is eroding with the end of her treatment. This is not a happy thing. India, meanwhile, is I imagine sick and tired of us making such a big deal about Dayssi's dumb treatments. When I am looking for reasons to feel guilty, India provides plenty. She has tolerated SO MUCH, on account of the steroids in particular. Endless crying jags, relentless pestering, watching us tolerate things that she would never have gotten away with. It is not fair, as she reminds us often, what has happened to her over the last 2 1/2 years. And as much as I look forward to trying to restore the balance in our family, I have no idea how we are going to do it.

Updates, all good

2008-05-20T11:56:00.001-07:00

Dayssi had vincristine yesterday, with daddy. Two pokes. Lots of stickers, gifts from the child-life folks, treats from the cafeteria, the works. She came home smiling. Daddy seemed unruffled. And, only two administrations left. We are going to make it.

Afterward, Dayssi went to her new elementary school for a meet and greet with her kindergarten teachers. She is among the youngest of the kids entering kindergarten (she'll be 5 in October), but she fit right in. Separated easily from me, ran to the front of the room to listen to the story, and looked pretty blase about the whole thing. She is ready.

Meanwhile, India was chosen to represent her class tomorrow at a retirement celebration for the school principal, with an adorable friend of hers whose name I won't mention because I believe they kind of, in a first-grade way, have little tiny crushes on one another. Recently this wonderful young man missed India's birthday party because of a conflict, but asked his mom to bring him to our house after the party so that he could deliver a present and wish India happy birthday. She almost fainted when I told her he was at the door, and he completely blushed when he saw her. India is not a big talker about what is going on at school, but she mentions this little guy every once in a while, and always with a special gleam in her eye. Then, today, while I was volunteering during math, one of India's friends (who is from India) asked me why we named India India. I told her that we chose the name India because we think it is beautiful, and our prince charming, who was seated nearby and listening, apparently, looked up from his work and said earnestly, "So do I."

I am sure I've said too much about this because I am now compelled to beg anyone reading this blog to PLEASE REFRAIN FROM MENTIONING ANY OF THIS TO INDIA. This frienship is very special and I do not want to make her feel self conscious about it. Thanks for your cooperation.

I wish for the werl to have pees.

2008-04-24T20:48:00.000-07:00

This was India's contribution to an big Earth Day poster at her school on which kids wrote their own wish for the earth. I love everything about it.

One more down

2008-04-23T22:09:00.000-07:00

Dayssi had vincristine on Monday, business as usual. This time even the vascular access team had trouble. There were three of them, with an ultrasound to look for good veins, and when the leader announced after her second unsuccessful poke that they were going to try once more and then quit, I almost fainted. What do you do when the vascular access folks walk out on you?? But the third poke worked, and they got the medicine into her, no burns, and we are one step closer to going off therapy.

I wrote last time that Dayssi will receive a year's worth of additional spinal taps (LPs) after going off therapy (OT) and inadvertently created a stir on the ALL kids email list. Apparently we are the only family on that list that expects extra LPs after going OT. I asked in clinic on Monday, and it turns out we are having LPs only to check for leukemia cells in the CNS, not to inject more chemo. I believe this is still unusual, but hey -- that's life at Stanford hospital -- way out here, apparently, on the cutting edge.

I know that sounds cynical. Despite our recent frustrations, we know we are blessed to be here and not somewhere else, and to have our oncologist and his 35 (37!) years on the cutting edge in our corner.

So there you have it, just the facts. Will try to post again with something more entertaining when I have a few more minutes to spare (ha!). There is lots to say about India's new, fabulous haircut, Jim's new wrestling accolades, my adventures in bluegrass harmony singing, and the ways in which Dayssi and her enormous spirit continue to stomp all over her cancer.

One more down, four to go

2008-03-27T18:42:00.000-07:00

Dayssi had vincristine and a lumbar puncture yesterday and it all went well. The vascular folks are on board and there was no trouble accessing Dayssi's vein (above the wrist). We were at the hospital from 11am until 4:45pm -- Dayssi had to fast until 3:30 -- but she didn't complain and was her cheerful silly self throughout. We have only four monthly vincristine administrations left before Dayssi goes "off treatment" in July. We have exactly five lumbar punctures left, during which they inject chemo into her spinal column. There is only one more LP before going off treatment, but this procedure will continue every three months for a full year after she goes off treatment, as a precaution against a relapse in the central nervous system. It is nice to be starting the count down.

India's 7th Bithday

2008-03-17T20:23:00.001-07:00

India had a "science" party with lots of experiments and activities.

A good time was had by all.

update long overdue

2008-03-12T21:23:00.000-07:00

Hi. We are still here. Dayssi's illness and its treatment are continuing to inch their way into the background of our lives. Since Dayssi's vincristine burn and our assertive follow up, we are getting better care, and Dayssi has continued to do well. After the burn, we called in the experts (the most experienced clinic nurses), who literally broke into a sweat trying to get the IV started (successful only after three sticks). The top gun was out the following month, so we brought in the vascular access team. Within second we learned that the veins in Dayssi's hands are totally shot and cannot be used anymore. I don't know whether the damage is permanent. This explains of course why it has been so difficult to use the veins in Dayssi's hands, but it does not explain how the most experienced pediatric oncology nurses at Stanford hospital wouldn't have known or at least suspected that this was an issue. The vascular specialist took one look at Dayssi's hands and said, "See that? See how the veins are dark and look different from yours? They are done. Her hands can't be used anymore." THen she used an ultrasound machine to look for good veins in Dayssi's forearm, and started a line with no trouble that worked beautifully. She explained to me that the hands are not the ideal place to administer vincristine because of the potential for damage to bones, joints, nerves etc, noting that the forearm is less dangerous. When I asked why the clinic administers in the hands, she looked me right in the eye and said with more than a hint of irony, "I have no idea. Next time you are coming in, call me." Great. But at least now we know whom to call. Well, I can't call her myself of course; the clinic has to call her. But I have already put in the request. Dayssi has a lumbar puncture and vincristine on March 26. With any luck there will not be a fight. We will not access her without the vascular team.

In other news, India turns 7 on Friday. She is having a few kids over for a science party on Saturday. Having searched high and low for a science cake, it is looking more and more like I will make one, in the shape of a beaker, with icing fluid and bubbles inside and flames (candles) shooting out of the top. Wish me luck.

India has started a pre-competitive swimming program at our local pool, and she loved the first day. Dayssi was also eager to join of course, but the coach suggested she wait until fall. Meanwhile, she is working on her freestyle and backstroke moves in the baby pool while India does her thing. She is also working on her letters and numbers with great zeal, filling pages and pages with letters and numbers strung together in random sequence and asking, "What does it say?" She is particularly focused on making a perfect S, and she has started spelling signs: s-t-o-p, e-x-i-t, t-o-y-o-t-a, etc. It is pretty amazing.

I've been volunteering in India's class once a week, during math, which is an enlightening and humbling experience. I used to think teaching MBA students was hard -- ha! Try taking five 6-7 year olds who are struggling with number sentences into a room to complete a work sheet. They are struggling with the math so they don't like it. They want to talk about everything except the math. They need to sharpen their pencils, get in arguments about who is looking at who sideways, and test whether if they act helpless ("I just don't get it!!"), refuse to try long enough, I will just tell them how to do it. Of course I don't, but then I worry that the teacher will think I am not being helpful (my assignment is to get them to finish the worksheet). What's funny also is that most of these kids can do it actually, they just put it off as long as possible, or try to get out of doing it (time's up!). As an aside, it has been very gratifying to be in class with India. She is a fantastic student and the most wonderful human being. I am very proud of her, every week.

Thanks for checking in; sorry it has been a while. Will try to post some pictures after the birthday.

Dayssi's Wish: Backstage at the San Francisco Ballet’s 2007 Nutcracker

2007-12-23T00:04:00.000-08:00

Well Dayssi’s wish came true today. We were ushered up to San Francisco in (an embarrassingly long) stretch limo to see the SF Ballet’s performance of the Nutcracker. We’ve seen many versions of this classic ballet, but this one was over the top. The dancers were magnificent. The musical performance was inspired, and the production was sumptuous and magical -- from the costumes, to the set, lighting, and special effects.

After the performance, we all went backstage to meet the crew, the lead dancers, and the managing director of the Ballet. Everyone was wonderful and Dayssi and her sister India were the center of attention. The stage manager made it “snow,” even heavier than it had during the show, and the girls danced and had a snowball fight with their new friend Lorena, one of the company’s prima ballerinas. They got to ride in Clara’s magic couch as well as the Snow King and Queen’s Chariot.

The folks from the Make A Wish Foundation and the Ballet were amazing. The event is one Dayssi will remember for a lifetime.

Some action shots are included below for your viewing pleasure.

Vincristine Shmistine

2007-12-12T20:12:00.000-08:00

Mom is more upset about this than I am. Not that she isn't entitled to be angry about what they did to me... but I am OK so don't y'all worry too much.

Love Dayssi

PS: Do you like my stickers?

Vincristine burn

2007-12-12T11:28:00.000-08:00

We've had a rough week. When Dayssi received her monthly vincristine last Monday, some of the medicine leaked out of her vein and gave her a serious chemical burn on the top of her hand. This is a rare but not surprising complication; the nurses go to great lengths to make sure the catheter is in the vein, and the vein is in tact, to avoid this problem. We believe it was a tiny leak -- probably the needle knicked the vein but stayed inside -- so very fortunately only a little leaked out. Judging from the damage it did, and knowing what we now know about what can happen when these vessicants leak out of the vein, we know we are incredibly lucky. The injury could have been devestating. These chemicals are designed to kill cancer cells, and when they leak out of a vein they kill everything they touch, potentially including nerves, muscles, vasculature and bones, none of which can regenerate.

Sorry for the drama -- we do not appear to have had this extensive an injury. My only excuse for providing this information is to justify how freaked out I am about this complication, which is not life threatening (although it has been INCREDIBLY painful), but which has shaken my confidence in the ability of the medical experts, and in myself, to protect Dayssi from devestating unintended consequences of her treatment in general.

I am angry at the nurses who, despite the fact that they administer this drug to kids every day, let this happen to Dayssi on Monday. My anger is compounded by the fact that this accident happened against the back drop of escalating errors and incompetencies in our clinic, which make it hard for me to see this as just bad luck, and even more by the fact that almost everyone in our clinic has been in CYA mode with me, trying to minimize the negative consequences of the mistakes they have been making, and who have persisted in believing that there were no signs that this was happening when, as I remind them every day, there was no blood return from the vein and Dayssi complained of pain when the chemo was introduced. This was an error, not an accident. No one has apologized. And what's worse, I don't know how to orient myself psychologically to see Dayssi through another 7 administrations of this drug at the hands of the same people (who are, to their credit, showing immense concern and trying to help minimize any further complications of this injury).

Practically speaking, that is not entirely true. I have already insisted that a vascular specialist be brought in to start Dayssi's IVs from now on; the clinic has agreed. I have already decided also to require only one of two extremely experienced nurses (neither of whom is supposed to be doing this anymore) administer the chemo. But emotionally speaking, I am stuck between a rock and a hard place. Dayssi needs this chemo to produce the outcome we are hoping for -- at least this is what they tell me. But I can barely muster the will to take her by the hand and lead her into this clinic, to hold her down while they poke her, to leave her alone in the operating room while someone I don't get to see administers intrathecal chemo. And I don't know what to do about that.

Dayssi's 15 minutes

2007-11-09T09:58:00.000-08:00

Yesterday the Make A Wish Foundation announced at a press conference that Dayssi is their 4500th wish child. So far the only press coverage we've seen is at the Palo Alto Daily News (http://www.paloaltodailynews.com/article/2007-11-9-pa-ballet), where there is a nice story and cute photo of Dayssi hugging the real ballerina who came out from her rehearsal with the San Francisco Ballet just to hang out with Dayssi. She was very kind, and she gave Dayssi a used pair of pointe shoes with her signature on them.

But this was just for the press. Dayssi's real wish (to meet a real ballerina) will be granted next month when Make A Wish and the San Francisco Ballet host us at a performance of the Nutcracker, and invite us backstage afterward, where Dayssi can now reunite with her new friend (who plays the Sugar Plum fairy in some shows).

These other photos were taken by one of the Make A Wish folks. As usual, it was hard to get Dayssi on camera. She turned the photographers into paparazzi who had to wait patiently for most of the morning and then chase her down every time she emerged from behind one of us, shutters clicking madly. Above she is holding a beautiful giant card they made for her with signatures from all of the SF Ballet dancers inside.

Here Dayssi and India are posing between two of the amazing Nutcracker costumes they brought out for the occasion.

http://www.paloaltodailynews.com/article/2007-11-9-pa-ballet

Halloween 2007

2007-10-31T23:14:00.000-07:00

We had a great night and collected lots of candy at our old stomping ground (Stanford West).

Goth Girl and Pretty Kitty pics below

Dayssi Turns 4

2007-10-11T17:35:00.000-07:00

Funny how the birthdays become like the holiest of holy days. I want to get on my knees and put my head on the ground and thank God for giving us another year with our child. Dayssi turned four last night at 11:59 pm and she is still here. She is growing and learning and throwing herself at her life with everything she has. She loves and is loved by everyone. What an amazing gift. Thank God.

Meanwhile her treatment continues. Dayssi had a lumbar puncture on Monday and intrathecal chemo. She gets this treatment only every three months now and she and I were both out of practice. I let the anesthesiologist pre medicate her against my better judgment (she was a little wild, as you all know she can be, but was happy and entirely cooperative). I didn't feel like challenging him and I've been giving myself a pretty hard time about that. Dayssi woke up from the procedure and sobbed inconsolably for 45 minutes, which hasn't happened since the first time she was put under. Totally unnecessary. But, not the end of the world. It's just that the fighting is getting old.

India is doing beautifully, growing taller and more mature, working on reading and writing with incredible energy and enthusiasm. Jim and I are both in the fall teaching trenches, pounding it out with everything we have, running on reserves. Dayssi is having a small birthday party on Sunday and we'll post some pictures afterward.

We Are Back

2007-09-06T20:28:00.000-07:00

Apologies for the radio silence. The fact that life is getting in the way of my blogging is, I think, a good thing. We had a great month on the east coast with lots of adventures (I will try to update with pictures): India lost her top front tooth, she learned to water ski, and to body surf and since our return, she has learned to ride her bike without training wheels. She has started first grade and successfully navigated her first real challenge at school, which was recess. More on that later. Dayssi learned to actually swim, she had blood work and vincristine at 2 different hospitals without incident, knocking the socks off of the nurses and lab techs who repeatedly called in at least three folks to treat her, assuming she would have to be held down. Not my girl. She smiled and talked calmly through all of it. She was healthy the entire trip and is growing like a weed -- Jim commented the other night that she looks like a little bean. Bottom line: the girls are absolutely thriving.

We are also doing well, having spent a month not REALLY working (well, just a little here and there), and not in health-crisis mode. But everything was waiting for us when we got home, so we are both swamped for the time being. I start teaching on Monday, Jim starts the following week, and so it goes.

Meanwhile, to get political for a moment, September is Children's Cancer Awareness Month, and funding for cancer research has been cut recently. Here is the url for a little video produced by some parents I know to educate and inspire people to encourage their lawmakers to restore funding. It is a beautiful tribute and it will give you a window on to the reality of childhood cancer. You'll have to cut and paste the url into your browser.

http://www.youtube.com/watch?v=AGS4yE5v9rM

Summertime Update

2007-07-22T19:33:00.000-07:00

Sorry we've been away from the blog. We're having a great great summer, so great that it almost makes up for last summer, which was the pits.

We've been really busy with lots of camps and swimming and picnics, and friends coming and going, and planning for our first real vacation since I don't know when. We are leaving for the East Coast this week and blogging will probably get even more sporadic afterward. My plan is to stay as far away from computers (and hospitals) as possible.

Dayssi had an LP last week, with intrathecal methotrexate, and vincristine, and a weekly steroid pulse. It knocked her down, for sure, but as of today she is up again. On our trip we'll have to continue Dayssi's weekly blood checks, and she'll get Vincristine in Burlington VT while we are in Plattsburgh. Fingers crossed that it all goes smoothly.

India starts her final camp tomorrow, and Dayssi has a swim camp this week too, which will be so great for her. Dayssi has, shall we say, a very high need for mastery. She throws herself completely at whatever new challenge comes her way; this summer her energies have been trained mostly on learning to swim independently, writing and reading letters, and lots of new exciting friendships at school. India continues to float along like a little buddha, taking in everything with a contented smile, happy to be in the moment and take it for what it is worth without looking back, or forward. They are so different, our little doodles, and both are so inspiring.

Pros and Cons of Summer in Northern California

2007-06-29T11:36:00.001-07:00

On Monday the girls went with Kirsi to the ranch where she trains horses and got up close and personal. The had a great time. We aren't really horse people (not yet anyway) but we are surrounded by horse country, and it is such a treat that the girls could take a 45 minute drive and arrive at this real working ranch, where they helped feed the animals and sat on the horses (India got a ride but the manager said Dayssi is too small to ride -- you can see she enjoyed just sitting up there plenty).

After they returned I took Dayssi for her blood test (counts are good and high), and on our way home we saw some smoke up in the hills near our house. We got home and went upstairs to see if we could see a fire, and we couldn't, but it wasn't long before we heard fire engines zooming from all directions, coming up the road that used to be our driveway. Soon there were helicopters dumping water and fire planes spraying fire retardant and, although we still couldn't see flames, I started getting calls from neighbors across the street, whose houses are up on a hill, sounding panicky and offering to help us evacuate. "Can you see flames?" I asked. "The entire hillside is on fire and it looks like it is moving toward your house!!" One neighbor on our side of the street called to say that the firemen told her the fire was blowing past, but not toward our houses, and he told her she could stay put. But just in case I decided to put some valuables in the car and get us all out of there. It is an interesting exercise, trying to decide what you should take when you are leaving your house not knowing if it will be there when you return. I couldn't think very clearly, but ended up grabbing some important papers (I guess I was imagining being stuck in various government agencies for days on end trying to place birth certificates, marriage license, passports etc.), jewelry (huh? do i even wear any jewelry?), and finally, OH YEAH, I remembered I had to get Dayssi's medicines. As I walked into the kitchen to get them I looked out the kitchen window and saw a row of flames within meters. It seemed to be just on the far side of the hiking path behind our yard. So we moved pretty quickly then into our cars and got the heck out of there, driving past news vans, stopped cars, and hundreds of voyeurs standing right across from our driveway. Nice. It does not inspire confidence in the emergency notification system.

Maybe they knew we were ok. The fire basically flowed past our house like a river, across the foothills, and finally went out when it reached Page Mill Rd. Well, it mostly went out, because every night since Monday fire trucks have zoomed up our side road at least once to put out a tree that has burst into flames or something. We smelled smoke for a bit this morning actually. But there isn't too much left to burn up there, and clearly the fire folks are watching carefully. Phew.

In retrospect I'm sure I didn't grab the right stuff, but I'm glad we got out of there and that no one was hurt anywhere. India was pretty scared though, running around trying to figure out what to take of hers (her kindergarten papers! they can never be replaced! or her shoes, which she started loading into a paper bag). What a cutie. Apparently her friends on the hill who could actually see the fire were even more traumatized. Dayssi was oblivious.

Oh, and Jim was teaching while this was going on, and since he lost his cell phone on Sunday there was no way for me to reach him. I left a few messages on his office phone asking him what he wanted me to take out of the house for him, but he never got the messages, at least not until the fire was out. Apparently he walked in the house at 8pm and wondered why it was so smoky. The girls were there with Kirsi, but I was at my first acting class. Yes, you read that right. More on that another day.

Sorry I didn't get pictures of the fire -- it wasn't on my to-do list at the time.

Another Great Week

2007-06-21T09:56:00.000-07:00

All is well. Dayssi started a new monthly chemo cycle this week, with Vincristine and steroids, but she is pounding through it with only minor complaints. India is enjoying theater camp. We had visitors for father's day and everyone enjoyed themselves. We've been going swimming, taking picnics to outdoor concerts, and I've found some extra time for yoga and hiking. It is a joy to see the girls having a regular full-of-fun summer. So, no worries at the moment.

Happy Remission Anniversary

2007-06-13T13:23:00.000-07:00

Today is the one year anniversary of Dayssi's remission. I don't know what else to say. I want to feel like celebrating but today I'm not quite there.

Maybe it is because we were in the ER last Friday with a fever. They saw "traces" of "the start of" a urinary tract infection so that is what we're treating, with antibiotics 4 times per day for 10 days. She also had a cold and a cough though, and I suspect the infection was viral. I hate that they give her antibiotics when there is no clear bacterial infection. I think of all the times we've been to the ER, only once was there clearly an infection. But we've left with a prescription for antibiotics almost every time. What is going to happen when she gets a real, bad bacterial infection, and the antibiotics don't work?

Maybe it is because we had another horrible day at the hospital on Monday, with lost orders, lost (and then found, luckily) samples and other incompetencies. I finally pitched a little fit and I must have sounded really annoyed because all kinds of people came out of the woodwork to "address my concerns." The managing nurse in the oncology clinic was great -- she was very disturbed by what I told her and she thanked me for telling them on behalf of all of the parents at that clinic who can't speak English and don't know that they are entitled to better care. We have devised a plan to deal with the lab orders (she is going to give me the order slips ahead of time and I'll bring them to the lab myself). She is going to walk us through Dayssi's chemo next Monday to make sure the correct order is submitted and filled, before anything is put into her body. The hospital "customer relations" lady was also very nice, and she gave us a gift certificate for the gift shop, which was very nice but truly misses the point. Did I mention that I had to ask twice, and wait an additional 45 minutes just to talk to the managing nurse and customer relations lady?

Maybe it is because there are kids relapsing on the ALL email list, all of the time, some after many years in remission. It is so unfair. And it is so frightening. I am so tired of worrying and I wonder if I'll ever feel safe. I called Dayssi's oncologist today and asked him to review all of her chest xrays from the various ER visits (UPDATE: HE CALLED ME, EVERYTHING LOOKS FINE TO HIM). Every time we go in they hear a little something, and they see a little something, on her left lung, but then decide it is nothing. She has been treated twice for pneumonia, once in-patient. On Friday, they saw and heard the same little something, but after showing the xray to the radiologist, decided it was nothing. I asked the ER doctor on Friday what it could be, if not pneumonia, and she said it is probably a natural variation in the lung, but that if it starts to change we'll do a CAT scan or MRI. If there are different doctors looking at her xrays every time we go into the ER, who is going to notice if it changes? Maybe her oncologist has already seen all of the slides and reports from the ER, and maybe he has looked at them together. But I'm not taking anything for granted these days.

Tomorrow is India's last day of kindergarten! We're going to do a joint celebration of remission anniversary, and last day of school, tomorrow. With any luck I'll be more up for it.

Good Snooze

2007-06-05T16:36:00.000-07:00

All hell has broken loose at the hospital. They are building a new cancer center and the old clinic and lab have shut down, everyone has been moved to temporary spaces, and the staff are trying to adjust. For three weeks now we've dealt with little administrative glitches, nothing serious, just the kind of stuff that drives me crazy. You head to the hospital for a quick finger poke, and you can't get out of there for hours: no one put in the order for our blood test, the new nurses have given us orders with other kids' names on them (I guess I should read that stuff too but I try to get on automatic pilot in there), the new nurses don't seem very skilled at drawing blood from little kids, we don't recognize anyone and no one has any sympathy for us, the new clinic is in the children's hospital, but the lab is now in Stanford hospital, about a block and a half away, so when the labels are wrong I'm running back and forth, usually with Dayssi in tow. Argh.

Yesterday the chaos reached new heights. We arrived at noon. There was no order for the blood test. "Have you had labs done here before?" asked the nurse. "Every Monday for over a year," I said. A nurse called our doctor, who gave the order. Forty minutes later, someone gave us a label. A new, very nice nurse said, "I'll do it for you in here so you don't have to go to the lab." We stepped into the utility closet in the clinic, where the new nurse tried to use the finger poke apparatus. I should have known we were in trouble when she didn't start by warming Dayssi's fingers. She couldn't get the poker to work, because it had a safety lock that had to be removed (I pointed that out after a while). She poked, and squeezed the blood out, but didn't tip the bottle back and forth a hundred times like the experts do. We left with a false sense of completion. I dropped Dayssi at home, and about 10 minutes after I got into my office (1:30pm) they called me to bring Dayssi back. The blood had clotted and the tests couldn't be run. I asked Kirsi to meet me at the hospital with the girls at 3:30. We ran into the clinic and the nurses acted like they knew who we were, and that we had come back for another blood test. They handed me a label. I took it, with Kirsi, Dayssi and India, around the block to the other hospital. They called us in, looked at the label, and said "Alessandro?" I ran back to the clinic while Kirsi stayed with the girls, and the nurses who I thought had recognized us earlier looked into the file and pulled out the correct label. I ran back. At 4:10 Dayssi and I sat in the chair together for her second (and ultimately, third) poke of the day. She put her head on my chest and, having skipped her nap two days in a row (she is experimenting with staying up all day, heaven help us), she fell asleep. Slept through the first (second) poke and all of the squeezing. But then her finger dried up, so the nurse had to poke her again. She slept through the second poke too; didn't even flinch! That is some good coping.

Dayssi's counts look good. She is riding her new bike with much mojo. India is now working on riding wihtout training wheels, which is also a big thrill. And, she did two whole pages of writing in the last two days, without asking for any help with spelling!

Summertime

2007-05-26T11:08:00.000-07:00

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

One Year Anniversary

2007-05-11T15:44:00.000-07:00

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

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

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

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

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

Dayssi's Marathoneuse

2007-04-26T20:32:00.000-07:00

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

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

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

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

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

Go Florence!!!!

Done with Another LP

2007-04-24T12:30:00.000-07:00

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

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

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

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

Quick Update

2007-04-22T08:57:00.000-07:00

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

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

What Happens in Vegas is often overrated

2007-04-08T11:30:00.000-07:00

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

What Happens in Vegas

2007-04-08T10:18:00.000-07:00

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

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

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

Dayssi's Wish

2007-03-27T21:09:00.000-07:00

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

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

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

Birthday and update

2007-03-17T15:07:00.000-07:00

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

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

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

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

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

Ouch!

2007-03-05T13:55:00.000-08:00

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

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

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

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

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

Rock and Roll Bunk Bed

2007-03-02T16:50:00.000-08:00

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

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

Ski Week

2007-02-24T21:42:00.000-08:00

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

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

Back in and out of ER

2007-02-15T00:12:00.000-08:00

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

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

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

India's Turn

2007-02-13T20:31:00.000-08:00

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

Otherwise all is well :-)

Epilogue

2007-02-12T20:25:00.000-08:00

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

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

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

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

Trip to ER

2007-02-09T03:02:00.000-08:00

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

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

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

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

Counts Are Back Up

2007-02-06T14:22:00.000-08:00

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

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

HAH! I laugh in the face of surgery

2007-01-30T19:08:00.000-08:00

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

[January 30, 2007 7:10 pm PST]

Humdee Humdee Hum

2007-01-29T16:32:00.000-08:00

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

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

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

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

Almost but not quite

2007-01-22T14:29:00.000-08:00

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

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

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

A week off chemo

2007-01-16T21:12:00.000-08:00

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

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

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

Quick One

2007-01-06T12:59:00.000-08:00

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

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

Poofy Dress Greetings

2006-12-28T15:59:00.000-08:00

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

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

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

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

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

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

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

All is well

2006-12-22T13:09:00.000-08:00

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

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

Will try to post again soon with some pictures.

Happy Holidays!

Celebrations

2006-12-07T08:49:00.000-08:00

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

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

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

Happy Thanksgiving

2006-11-27T09:24:00.000-08:00

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

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

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

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

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

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

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

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

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

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

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

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

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

Dayssi Rides

2006-11-17T14:06:00.000-08:00

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

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

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

Halloween Pics (at last)

2006-11-13T19:36:00.000-08:00

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

"Dayssi, India; I AM your father!"

Dayssi skates

2006-11-13T14:29:00.000-08:00

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

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

Check!

2006-11-06T15:12:00.000-08:00

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

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

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

LTM on Monday

2006-11-04T22:36:00.000-08:00

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

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

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

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

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

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

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

Will upate on Monday.

False Start

2006-10-31T12:35:00.000-08:00

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

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

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

Kicking cancer's BUTT

2006-10-24T14:31:00.000-07:00

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

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

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

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

India Lost a Tooth

2006-10-23T14:00:00.000-07:00

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

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

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

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

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

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

More on Giving Blood

2006-10-19T14:07:00.000-07:00

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

Here are links to the red cross.

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

Thanks J!

TO GIVE BLOOD

2006-10-18T10:38:00.000-07:00

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

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

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

Thank you.
Deb

Crash

2006-10-17T20:46:00.000-07:00

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

2006-10-10T21:31:00.000-07:00

Great, great day.

Superstitious

2006-10-07T11:25:00.000-07:00

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

2006-10-04T21:05:00.000-07:00

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

2006-09-26T10:12:00.000-07:00

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!

2006-09-19T22:33:00.000-07:00

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

2006-09-14T19:10:00.000-07:00

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

2006-09-09T21:23:00.000-07:00

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

2006-09-06T20:39:00.000-07:00

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

2006-08-28T16:18:00.000-07:00

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

2006-08-24T13:45:00.000-07:00

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

2006-08-18T15:56:00.000-07:00

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

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

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

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

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

Okey dokey

2006-08-14T10:47:00.000-07:00

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

2006-08-08T09:56:00.000-07:00

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

2006-08-06T16:28:00.000-07:00

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

2006-08-02T14:37:00.000-07:00

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

2006-07-28T17:05:00.000-07:00

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

2006-07-26T23:25:00.000-07:00

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

2006-07-26T16:48:00.000-07:00

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

2006-07-24T13:29:00.000-07:00

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

2006-07-17T10:58:00.000-07:00

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

2006-07-12T22:19:00.000-07:00

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

2006-07-06T14:29:00.000-07:00

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

2006-07-02T18:32:00.000-07:00

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

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

So Happy Together

2006-06-29T22:35:00.000-07:00

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

Growing up, despite everything

2006-06-26T13:44:00.000-07:00

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

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

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

Princess Dayssi

2006-06-20T18:10:00.000-07:00

One from the royal archives...

Listening to Keflex

2006-06-18T20:51:00.000-07:00

Dayssi's UTI appears to be on the way out, no match for the Western medicine being practiced at LCPH. I have to say, this experience is having quite an impact on my appreciation for what can be accomplished with some hard science and the use of pharmaceuticals. You start to feel like the doctors can fix anything, which I guess explains Dr. Dahl's swagger. I wonder how many children he has rescued from the brink of oblivion.

I am also reassured about the critical role of psychology in all of this, particularly in Dayssi's illness and treatment. Her discomfort, so far, has been all about feeling out of control. It is the only part of this (besides the series of pokes she received in initial emergency room visit) that has really bothered her. Jim and I are teased often about the plight of our poor children, having two psychologists as parents, but I am so glad right now that we can appreciate the psychological aspects of what is going on. We try to manage her expectations and give her choices whenever we can, and it really seems to help. And sometimes we just refuse to do what makes life easier for the doctors and nurses when it makes life easier for Dayssi. For example, we now refuse to put Dayssi in hospital pajamas because it freaks her out. She goes into the OR either naked, in a diaper, or in her own pajamas. The doctors are pretty understanding about this in general, the nurses are not always as easy going, but we are now insistent about letting her choose what she wants to wear. And typically, she rides happily into the OR on her gurney and sits quietly with us until she is asleep (usually they let us go in there with her, depends on the procedure).

We spent a good part of every single day at the hospital last week, between Dayssi's routine stuff and then treating and checking up on her infection. The oncology clinic is very aggressive about everything and I like it. After our emergency room visit I called to check in with our nurse practitioner and, even though Dayssi's counts are normal, they brought us in for a bunch of checks just to make sure the UTI was the only infection in Dayssi's body. Her little PORT has been getting a serious work out. It frightens her to have it accessed but it doesn't seem to hurt, at least not when we can get the anesthetic cream on early enough (an hour is good, less than 30 minutes not so great). They tell me in the oncology clinic that after a while the kids are entirely unaffected by having the PORT accessed. I'm looking forward to that.

We're doing ok with the new drugs but, just like our first venture with the steroids, the pattern with new meds seems to be, initial curiosity and acceptance, followed by rage, fury and resistance to the point of having to be forced, to finally finding a bunch of ways to feel in control of the situation and then accepting the meds as a necessary but only slightly annoying part of life. It can be fun to watch how resourceful Dayssi is in terms of her ability to gather her wits and figure out how to feel like she is choosing to do this. She is very deliberate in her choices of who will give the medicine, in which room, with which kind of dropper (right now she is hooked on a teeny tiny dropper from a bottle of infant tylenol which takes forever to use since we have to fill and refill it many times to get her a single dose). We are struggling with the pill, which she only took in pieces twice. We are now crushing it and mixing with cranberry juice concentrate, but it tastes gross even with the concentrate and the more you add the more she has to take. Tomorrow we'll try what the pharmacist recommended, which is to crush the pill with a drop of water in a spoon, then add just enough syrup to fill the spoon, suck it up in a dropper and try to administer in one squirt. I don't think the baby dropper is going to do it, but we'll see. She might come around to the idea of only one squirt.

We are seriously sleep deprived right now. Since Wednesday there have been a lot of hours every night that both of us have had to be awake. While Dayssi was feverish she woke often, uncomfortable, but didn't want to take any Tylenol (which she used to love). And we've had to wake her to get her to take her antibiotic too, which you can imagine is really fun. Sometimes it takes over an hour just to get the Tylenol in her, before the antibiotic, including watching a movie on Jim's portable DVD player and spending time in three rooms. BTW, for any of you whose kids don't like to take Tylenol, Jim bought some little dissolving tablets today and Dayssi liked them alot. If they are like the anti nausea meds she takes they dissolve in like 3 seconds. As she says, "It disappeared!" Anyway, we are hoping that with her UTI clearing things will fall back in to an easier rhythm. But we also feel like we are getting a realistic preview of what much of the next 3 years might be like. It was very hard this week, and she was actually in pretty good condition, relatively speaking.

Blah blah blah. That is the latest. A few words here about India: she is doing ok, worries about Dayssi with all the crying at medication time, but it seems to make her feel better when she can offer Dayssi something she wants.

Speakinawich, she is on my lap waiting for me to read her some books. Gotta go.

Blip

2006-06-16T10:21:00.000-07:00

Just when you thought it would ONLY be good news here we have a very minor blip in the pattern. Dayssi and Deb spent the night in the emergency room on Wednesday because Dayssi had a fever and, it turns out, a urinary tract infection (ow!). Her counts are all normal so she'll fight this off like a normal kid, with a big honkin' course of antibiotics (every 6 hours for 10 days) on top of everything else. Poor kid.

She is out right now with Jim getting a bagel with cream cheese which we promised at 3am as a reward for taking a bunch of Tylenol and antibiotic when she was feverish, exhausted, and apparently nauseous (she gagged a few times BEFORE taking any medicine, so she also had to take an anti-nausea pill before all of that).

Anyway, nothing serious at this point, thank goodness.

pill shmill

2006-06-14T09:24:00.000-07:00

The jello was a bust and Dayssi can't seem to get herself to swallow a pill but, amazingly, she doesn't seem to mind having pieces of 6MP tablets dissolving in her mouth. We had cut them into quarters and as she took each piece into her mouth she would swallow whatever was with it but the pill wouldn't go down. When we asked "Is it gone?" she simply shook her head, nonplussed, and showed us the pill on her tongue. We started giving her spoonfuls of frozen cranberry juice concentrate to wash it down and eventually she exclaimed (hands up, big eyes) "It's gone!" But I would have to say that she ate, rather than swallowed, the pills. Anyway, she took them, no problem, and she seemed proud of herself afterward. What a relief.

More good test results

2006-06-13T18:40:00.000-07:00

Dayssi's MRD test result came back from St. Judes looking great: less than .1% of blasts in her marrow. This is equivalent to what you'd see in a normal healthy person. So we are now on the low risk arm of the treatment protocol. We had a long meeting with Dr. Dahl to discuss the results and whether we want to stay on the protocol, which entails random assignment of Dayssi to treatment condition. Before making the decision, Jim did a ton of research and I warned the doctor ahead of time so that he could prepare. Having had a few meetings with Jim already he knew what to expect. "I'd better study up!" he told me. Jim executed the classic Phills tete-a-tete and I would say that Dr. Dahl held up relatively well, barely breaking a sweat when Jim grilled him about the relative effectiveness of different doses of PEG aspariginase, and maintaining both his swagger and sense of humor for the duration. In the end, we opted to stay on the protocol, and were assigned to the standard treatment arm (Dayssi will not receive anything experimental). We are as comfortable as we can be with this outcome, knowing that the standard treatment is the best known treatment at present and knowing that we will not have to contend with additional uncertainty about side effects and outcomes.

Yesterday the fabulous nurses in the oncology clinic accessed Dayssi's new port with incredible ease -- she did not even seem to know that she was being poked in the chest. This morning we had a rougher go of it: the nurse preparing her for her spinal procedure was less experienced apparently and failed to hide the needle, and then missed the opening so that it had to be done again (luckily, next time under sedation while her other procedures were being completed). They used gas to put Dayssi to sleep this time and it seemed to go very smoothly. However, the doctors also forgot to remove the line from her port during the procedure, and it was taped down pretty tight, so Dayssi had to endure having it all removed while she was awake in the recovery room. She put up a pretty good fight but once it was over she dried her eyes and asked for chicken nuggets. And that was the end of that. There are good things about going through this kind of stuff when you are only 2.

Tonight we are back on chemo and we have to try some new pills (Mercaptopurine or 6MP). Jeepers creepers. They can't be given with milk products (no yogurt) and they have to be given on an empty stomach. We have the option of crushing them (but they are a biohazard, we have to wear gloves, and apparently they taste nasty) and mixing with a syrup of some kind OR trying to get her to swallow the pill (but she has to take 3 pieces of pill). We are going to try putting a piece in a jello jiggler tonight to see if she can suck it down without feeling it. She thinks it SOUNDS like fun, so that is a start. We'll let you know how it goes.

Haircut and Dance Recital Pics

2006-06-11T10:15:00.000-07:00

Dance Recital

Before

After

Don't Worry. Be Happy.

2006-06-10T22:49:00.000-07:00

Just an update. Turns out the red patch was not an infection, but just an irritation near the site of the LP due to the bandage. We were treated like royalty at the ER. Dr. Schiffman, the oncology fellow on call, had called ahead and we were whisked in right away. Overall, we spent more time on paperwork and flirting with Dr. Weiss than having our "boo boo" examined or treated. While waiting to be discharged, we passed the time watching the Little Mermaid in our room and then, a bit giddy with relief, went out (at 10 pm) to indulge ourselves on ice cream.

We are home now and going to bed; exhasted after a night of excitement.

Haircuts etc.

2006-06-10T21:01:00.000-07:00

We haven't blogged much about Dayssi's hair yet but we could have. Those of you who know Dayssi know all about the luminous golden ringlets that were kind of her trademark. What many of you don't know is that it is a big job to keep that kind of hair looking groomed -- challenging for both groomer and groomee -- and that May 9, the day of Dayssi's A.L.L. diagnosis, was the last day that anyone tried seriously to comb it out. In the past month it became kind of like one big dreadlock, and what to do with it became a stimulating topic of conversation for Jim and I, as well as a variety of curious observers.

Late Wednesday of this past week we agreed it should be cut, rather than wrestled with, especially considering the typical effects of chemotherapy on hair. We asked Dayssi whether she wanted a short hair cut, and when she giggled and nodded, we sped into action. I had an appointment at Juut in Palo Alto for myself on Friday, so I called right away and was able to book cuts for Dayssi and India at roughly the same time.

The salon was fantastic. I've always thought of Juut as a kind of snooty place but when I explained what had happened to Dayssi's hair they offered to comp the haircut, and put both Dayssi and India into the very kind and competent hands of a stylist-apprentice named Beth. Beth has great energy, she was very patient and gentle with both girls, and she she did an excellent job. India got an fantastic trim (her hair looked beautiful during the dance show today), and Dayssi got a really adorable little pixie kind of thing. I also got a nice pixie-ish haircut from a very sweet and talented stylist named Phil. Normally I wouldn't use this blog to promote a business but after how they treated us on Friday, I think they deserve it. BTW, for anyone looking for a stylist for your kids or yourselves: a haircut from Beth is very reasonable but a haircut from Phil ain't cheap.

We've had a great week and weekend. Dayssi off steroids is so familiar -- if she didn't look like someone else I would say she is just like her old self. It is amazing to realize how much the steroids affected her mood. She was very subdued while on them, occasionally smiled but almost never laughed, and was much less social than usual. We assumed that this was partially due to her illness and what she had been through. But it appears to have been largely due to the steroids. For the past five days she has been super social, giggling and laughing almost constantly, and playing like a regular almost-three year old. We'll be on steroids again in the near future, but for much shorter and more intermittent stints.

Today was India's dance recital and we all enjoyed ourselves there. Later we went to a neighborhood picnic, which was also a lot of fun. About an hour ago Jim took Dayssi in to the emergency room because one of the small wounds from the pokes on her back from Tuesday was looking red and irritated. I am blogging now to keep myself distracted, waiting to hear from him, hoping this will not turn out to be a big deal. She was not in pain today and did not have a fever.

When Jim gets home we'll update on Dayssi's wound and I will try to get him to post some hair shots as soon as possible.

More thanks: fantastic meals and gifts keep pouring in, as do the phone calls, emails, blog comments, and generous acts of support from close friends and family. As always, each gesture is a comfort. Thank you.

Day 29: The PORT is in

2006-06-06T15:31:00.000-07:00

Today was a big day for Dayssi in the operating room. She had her PORT-A-CATH implanted, her PICC line removed, a bone marrow aspiration for Day 29 biopsy (this specimen will be sent to St Judes Hospital for the very important Minimal Residual Disease prognostic test), and a spinal tap to inject some more methotrexate into her spinal column.

She came through it all just fine and we felt very supported by the surgeons, nurse practitioners and anesthesiologists who came by a number of times before, during, and after the procedure to update us on her progress. It was another day of feeling lucky to be at Lucille Packard Children's Hospital.

Dayssi is off steroids as of last night, but it will take another few weeks for the drugs that are already in her system to work their way out. This is good in the sense that they will be continue to track down and eliminate any remaining leukemia cells while they are in her body. So, while we were looking forward to closing the "open all night" restaurant, it looks like we will have to wait for a while to send the staff home.

The labs from yesterday are in and looking good. Her ANC (a key indicator of immune function) was way up to 2000, well into the normal range, as were her platelets at 343.

We saw Dr. Dahl today and he was at his most swaggering "We are kicking some serious cancer butt” self; and tonight, so are we.