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.