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.

Back in and out of ER

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

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

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

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

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.