Day +665: Big Boy Potty and a Special Letter

I guess I just had to post about Isaac being resistant to the big boy potty for him to get it figured out. I think the whipped cream was the key step. We first got him to sit down on the plastic potty with his pants on, in exchange for whipping cream. Once he got used to that a little, we switched to giving him the whipped cream only if he actually went potty. He did it once, and that's about all it took. Then whenever he was about to go potty, we'd say "Run to the bathroom, quick!", and he'd say "No!" and start to cry, and then we'd say "Whipping cream!" and he'd hesitate for a minute, and then turn and run to the bathroom. After two days of wearing underwear all day with no accidents, Keri took down the changing table and got rid of the smelly diaper genie in the back room, and he hasn't looked back. He's had a few accidents here and there, but only a few. I think that's pretty good for someone who isn't even two and a half yet.

Next step is to get him to give up the plastic potty and sit on the big one. The current stage, where he goes in the plastic potty and we have to dump it into the big one and then spray out the plastic one, is actually worse than diapers in some ways. At least it is for people like me with sensitive stomachs. He did go on the big potty all of last weekend in the guest house we stayed in, but he had a fit when I tried to move his plastic potty out of the bathroom, so we're giving him some more time. Pretty soon we're going to start withholding the whipping cream until he goes on the big potty...

Last weekend we got a last-minute invitation from our friends Blaire and Walt, with the two-year old daughter Devin, to a beach house outside of Watsonville, 15-20 miles south of Santa Cruz. They had lucked into the house when a friend of Blaire's had a family emergency and couldn't use the reservation they'd already paid for. So we got to spend a free weekend in a house about 30 yards from the beach in a gated community. It was very nice, although not particularly luxurious other than the location. The kids had an absolute ball, of course; they get along well with Devin, and they do love the beach. Sunday we found a great spot on a river about 200 yards inland from the ocean across a sandy spit. The river side of the beach was much less windy, the water was knee-deep about 30 yards, and there was a massive stump that had somehow ended up marooned there right at the water's edge that the kids climbed on for hours. It was a very nice and relaxing way to spend a 3-day weekend.

Monday we stopped by to see Rich, Olgica, Niko, and their brand-new baby girl Lenka. Mina was excited all weekend to go and see Baby Lenka. We'd been talking about the baby for several weeks, and last time we were over there Mina had gotten to feel the baby kicking in Olgica's tummy. She really wanted to hold Lenka, but that's going to have to wait until after Niko has his first turn. Lenka is a very pretty baby, with a head full of dark hair and pretty dark eyes. It's so nice to hold a newborn and think back on the days when our kids were that size.

Mina had a doctor's appointment last week, and it went really well. Her blood counts are looking stellar these days, and everyone is kind of gearing up for the two-year anniversary of her transplant here in a couple of months. We've finally been given the name of a doctor at Children's Oakland who can perform the long-overdue neuro-psych evaluation. That really should have been done two years ago, and then again last year, but UCSF hasn't had the right specialist and it hasn't felt like that urgent of an issue with all of Mina's progress. But it will be nice to get that finally taken care of.

And last but certainly not least, the most exciting news of the last couple of weeks is that we got a very nice letter from Mina's donor! He had sent a really touching letter along with the stem cells that was read over and over again on transplant day and really helped to cast the whole experience in a positive and optimistic light. Donors and recipients are allowed to contact each other after a year, and we finally sent him a package in about August that had a letter, pictures of Mina and the rest of the family, and some drawings that Mina had made for him. It took us awhile to get the package out because it's kind of an emotional thing and very significant, and we wanted it to be just right. He seemed to feel the same way about the return letter. He is a very talented amateur photographer, and he sent us a CD with some pictures of his friends and family and some very beautiful photos that he had taken along with a letter telling us a bit about his life and about the process of donating.

He said this is kind of a private thing for him; only a few people know that he did this, so we're going to respect his privacy and not say much more about him. But to answer some questions I know some people will have, he didn't say anything about any friend or relative with cancer that might have spurred him to place his name on the registry, though he himself had a medical incident that probably helped to make him more sensitive to the needs that are out there, and he has a been a platelet donor for ten years which says right there that he is a unique and caring person. And he didn't mention anything about his ethnic background, which would be interesting to know because of the tissue matching. Certainly nothing about him says "Scandinavian", but then again Mina is probably only half Scandinavian anyway.

So this was a very exciting development, and Mina knows that he is a significant person in her life and that this was a big deal. The other day she was asking me some tough questions: "Why did he give me his blood?" "Why did my blood make me sick?" A lot of times kids ask "Why" questions just to make conversation, but I suspect these questions will come up over and over again.

Thanks for checking in on us! Sorry for the slow posting these days. I'll try to get back to at least once a week now that things are slowing down a bit at work.

Day +649: Cousin Zoë

This has probably been the longest I've gone since the last update. Things have been going along pretty normal for us. Everyone is back in the routine: Keri is teaching "Islam and Gender" on Monday and Wednesday afternoons at USF, I'm back to working a somewhat normal schedule after keeping crazy hours all summer and fall, Mina is still loving her school and her school friends, and Isaac is still mostly in his own little world.

We are trying to get Isaac to think about potty-training, because we've enrolled him for the spring semester at Mina's school, and he can't go until he's diaper-free. He's been pretty resistant to the idea. He's cautious by nature, and I think he's also reacting to the pressure we've put on him, but he generally won't sit on the big-boy potty at all, even with his pants on, and even to get a "treat". Mina's teacher recommends a spoonful of whipped cream as a treat when they use the big-boy potty; I told Isaac I'd give him some if he would just sit there with his pants on, but he's not going for it yet. He knows when he's going poop at least, and he thinks it's great when Mina gets a treat for using the big-girl potty, so hopefully he's not far off.

Then again, he may not be quite ready for school anyway. He's been there several times and seems to enjoy it, but he always cries hard when Keri tries to leave. He's been very mommy-focused lately. They've had a lot of different babysitters over the past few weeks as we've tried to find a regular to supplement Meghan, so we're hoping that's part of the problem. There's also been a stomach virus going around, so he may not be feeling all that great. Mina has had it as well, and she wasn't quite herself for a few weeks. I was a bit worried, in fact, because she also had some rather large bruises at about the same time, but the bruises have gone away and her energy has returned, so I'm feeling a bit better now. Both the kids seem a bit ill today -- Isaac is whiny and a bit warm, and Mina started sniffling. Today she asked "When is this cold going to go away?" in an exasperated voice.

Mina has still wanted to wear her "princess" and her "ballerina" a lot, only now it's been supplemented with her "Snow White". Her Snow White is a beautiful dark blue velvet and white lace dress that Cousin Kennedy used to wear. We've started letting Mina wear it at home, because we frankly don't have many occasions for her to wear it out, and it's almost getting to be too small for her. She loves it. She's still into playing doctor, but this morning she had a new game she brought home from school: "haircut". She made Keri and then me sit on the stool with a blanket around our necks while she brushed our hair and pretended to squirt water on it and cut it. She says they play "dentist" at school too. She's still way into her babies, and in fact she's taken to calling one of her babies "Waah Baby". It's one that Keri bought her last fall after Waah Baby's disappearance; the doll looks somewhat like Waah Baby and Keri thought that's why she reacted so strongly to it in the store. She's been calling it Waah Baby ever since we came back from Christmas, and when I asked her if it was the same Waah Baby that was a lost or a different one, she says it's the same one that was lost. It's interesting, because there was never a screech of "I found Waah Baby!" or tearful reunion or anything. But of course we're happy to let her believe it's really Waah Baby.

Isaac has a continued fascination with pilots, bus drivers, and now the garbageman. Garbage day has always been special here, and supposedly it's that way all over San Francisco. Our kids rush to the front window when the hear the garbage trucks, and watch in rapture as the garbageman empties the cans into the big truck. The garbageman usually waves when he sees them, and one day he rang the doorbell and gave us two little miniature cans for the kids to play with: a black one for trash, and a blue one for recyclables. Since about two weeks ago, Isaac's been saying "I want the garbageman to hold me!" He says it periodically throughout the day, mostly on garbage day but on other days as well. One of these weeks we'll take him down to meet the garbageman, but I'm sure he'd been too shy to actually get near him. Pete, one of our babysitters, took the kids to the firehouse up the street, and they both got to sit in the fire truck for a minute. The next time I told him Pete was coming, Isaac said "I want to go to the firehouse!" And Keri had him at a restaurant where a bus driver was eating his lunch. Keri told Isaac that the man was a bus driver, and when he got up to leave, Isaac wanted to go with him. Keri said he was ready to leave her right there in the restaurant and walk away with the bus driver.

I've been saving the hard part for last: Mina's Cousin Zoë, who just turned 4 and who is one of Mina's idols, has just been diagnosed with ganglioneuroblastoma (http://www.emedicine.com/radio/topic293.htm, http://www.emedicine.com/ped/topic1570.htm), cancer of the sympathetic nervous system. She had a tumor removed from near her kidney a couple of weeks ago and a bunch of scans and other diagnostic tests. They suspected neuroblastoma from the beginning, and today the official diagnosis came back. Zoë is the daughter of Keri's sister Kristi's daughter Karissa, so we are her great aunt and uncle and she's Mina's first cousin once removed (I think). Keri's family was in tatters at the news, after dealing with Keri's father passing from lymphoma, Kristi's husband Bill dealing with lymphoma (he's doing great), and then Mina.

Luckily, it appears that the diagnosis is a favorable one. The treatment and prognosis for neuroblastomas can be very different depending on the stage, whether it's metastasized anywhere in the body, the specific genetic and molecular markers, and other factors. It's apparently extremely rare, like 1-2% of cases, where ganglioneuroblastomas are diagnosed before they've metastasized somewhere else, but it appears that's the case with Zoë. She also isn't showing any of the negative markers. The family met with the oncologist today, and from what we heard about the meeting, they're just going to follow her with scans for now and not even put her on any chemo. I'll post again if I hear any differently, but it would be really great if she didn't have to go through chemo. She's also lucky that she can be treated at Childrens in Seattle, part of the Seattle Cancer Care Alliance, so she should get excellent care. Please keep Cousin Zoë in your thoughts and prayers along with Mina Brigitta over the next several months.