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.

HAH! I laugh in the face of surgery

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

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

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

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

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

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.