Summertime

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

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

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

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

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

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

What Happens in Vegas

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

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

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!

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

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

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.