It wasn’t over yet

Tuesday, June 5th, 2018

We live in an old farmhouse, built by the Moore family. The Moores also established another homestead, on the other side of the mountain, around the same time they built ours. The Moores are currently making their sixth generation of Kneelanders, one of whom will be in Kindergarten with Tristan next school year. Point is, our homestead has been around for a while.

There are things inherent to a farm six generations-old. These include lead paint, shards of glass and pottery that get churned up to the surface by gophers, and shit tons of sharp, rusted objects. There are some really neat things, too, like arrowheads. Since we moved in six plus years ago, we’ve collected a big pile of rusted metal things– saws, tools, yokes of horse harnesses, horse shoes, horse bits, parts of plows, and gobs of nails, some of them square – as well as a bowl of arrowheads. Gary and Phoebe have a special, maybe slightly weird, collection of broken glass and pottery.

Given the frequency with which rusted metal shows up, combined with Tristan’s recent spate of mishaps, it’s not enormously surprising that we went to the ER again Sunday evening. AGAIN!

Tristan spent most of Sunday hunting a lizard around the tall stump of a dead tree near our house. This lizard is particularly cool because it’s black, to match the soot on the inside of the stump, which burned at some point. And he’s got a bright blue belly, brighter than most. He shares the tree with a flicker. Definitely worth spending the day trying to catch. Maybe even worth a trip to the ER.

A bit after five, just when I was about to pour a glass of wine, Tristan came sobbing and screaming in the door. “I’m going to get tetanus,” he wailed. He was so upset, tears streaking his face. What are you talking about? I asked. He turned to show me his side. “I got scratched on barbed wire, Mom,” he screamed. Indeed. There was a ten-inch, ugly, curved scratch covering one whole side of his torso.

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Tristan knows what tetanus is, because I frequently remind the kids to be careful around rusted stuff. Mostly I remind Tristan, who has no immunity to tetanus. When the Infectious Disease doctors at UCSF tested his titers to a bunch of things about a year ago, they noted his susceptibility to tetanus.

After confirming that his organs weren’t spilling out of his body, I was instantly gopher-bite level of pissed off. Ugh, how could this be happening? In vain hope that the wire might be fresh and shiny and rust-free, I grabbed his hand and demanded that he show me exactly where was the offending metal. Totally rust-covered, of course.

I marched him back inside, plopped him on a kitchen stool, and began to clean the scratch with soapy washcloths. Phoebe, who is super solid in an emergency, brought me fresh, wet, soapy cloths. With the other hand I speed-dialed the oncology hotline at UCSF. I swear they know me by now. I definitely recognize the voices of the folks at the answering service. It was the nice lady this time (there’s one who’s kind of unfriendly), and on a later call that night, the British guy.

Eventually I got the doctor on call on the phone. It was Dr Hamoudi, who was a Fellow assigned to Tristan at the very beginning of his treatment. I remember him sitting with me in the OR before Tristan had is port placed. On the phone, I related the lizard hunt / wire encounter. His response was an elite, highly-educated, best-of-the-best, “Um.” Then he explained that, while brushes with rusted wire happened frequently enough in tetanus immunized kids, and also in immune-solid unimmunized kids, he didn’t have much experienced with immune-compromised tetanus-susceptible kids. He’d have to make some calls…but a trip to UCSF wasn’t out of the question.

ARRRGGGGGGG. Are you kidding? Please don’t make us come to the city…again, I begged. He couldn’t estimate that likelihood, but said it was real. He’d call me back after making some calls.

While I waited anxiously for his return call, Tristan shifted from distraught to joyful. I had reassured him that, no, he would not get tetanus because we would go get him some medicines to make sure that didn’t happen. But, I said, we might have to go all the way to UCSF. “San Francisco,” he said. He jumped up. “I’ll go pack the movie player and the DVDs!” The thought of six hours of unfettered movie-watching in the car was enormously appealing to him. He bounced around while I sat with my head in my hands. I looked up and yelled, no way Buddy. You’re not packing up any movies. THIS IS NOT FUN. There is NOTHING fun about this!!! No movies. No player. I stomped upstairs to pack my usual hospital stay gear.

And what about Tomas and Phoebe? Gary was away for this, of course. I mean, why would things be easy? I packed an overnight bag for Phoebe, sent Tomas to pack his own things, and made some phone calls to neighbors. No answer at the first two, but, in the end, sweet, kind Betsy and Ann said no problem, drop them off.

After a series of calls that lit up the UCSF switchboard and zipped back and forth to my cellphone, Dr Hamoudi called back with the word on what Tristan would need: the DTAP vaccine, which would give him short-term protection against tetanus (soon to be erased by the chemo), as well as tetanus immunoglobulin. But, he said, he wasn’t sure if we could get the latter locally. We began our trip down the hill while we waited for him to check with our two local hospitals, and I dropped Tomas and Phoebe, who were just rolling with it all like it was everyday stuff…which it kind of is.

It turned out the St Joe’s had the goods. We had only a brief wait, made only slightly uncomfortable by the presence of a seriously messed-up tweaker, and then the ER staff greeted us like regulars…which we kind of are. We were treated by an ER doc / karate mom whom we’ve known for years, and we breezed through in a record time of 1.5 hours. Betsy and Ann fed me a delicious vegetarian dinner when we stopped in to pick up Tomas and Phoebe, and we were in bed at a reasonable hour, Tristan’s side smeared with bacitracin and covered by a clean hand towel.

So, here’s the big question: are we done for the summer? Let’s recap. Since Tristan’s diagnosis in 2015, we’ve had a massive emergency every summer. In summer 2016, it was having Tristan’s left hand crushed by a boulder during an intense tadpole catching exercise. That was a horror show. In summer 2017, it was an inguinal hernia, but that was first diagnosed as a solid tumor and testicular relapse. That one really stunk. And, over the last two weeks leading into summer 2018, an avalanche of smaller, yet harrowing incidents: a med-evac to UCSF nominally for pneumonia, but really because our St Joe’s is understaffed and undertrained; an attack, or really just a stern reprimand, by a grumpy gopher tired of being harassed young human trespassers; a broken arm suffered in a valiant, and successful!, attempt to block a soccer goal; and, now, unable to further avoid the scads of rusted crap found on an old Kneeland farm, a gnarly ten inch-long scratch from hip to lower shoulder blade inflicted by a rust-coated wire fence during the hot pursuit of a Western fence lizard. I think we’re done, don’t you? I’m knocking wood right now.

 

 

 

Addendum

Tuesday, May 29th, 2018…again

I published that last blog post a few hours too early. Without knowing it, I was en route to the next dot in the dot-to-dot of disasters I’ve been charting.

I just returned from having Tristan’s left arm x-rayed and splinted. It’s broken — a buckle fracture to the left distal medial radius. He’s absolutely overjoyed. “Mom,” he said, “this is kind of weird, but I feel really proud about my broken arm.”

This is how it happened: yesterday, immediately after Gary and Tomas arrived back from the final day of Tomas’ tournament, which Phoebe, Tristan, and I forewent to get home and prepare for the week, Tomas put on full soccer regalia and invited his siblings to join him in our “soccer arena”, a horse paddock. They took time to pump up the soccer balls extra hard. In a valiant effort to block a score from Tomas, Tristan extended his left arm and took the full force of the over-inflated, concrete-hard ball to his palm, which hyper-extended his wrist and buckled the radius.

We thought it was a sprain, and we iced it and proceeded with life. It hurt this morning, but not that much; Tristan went to school. When Tristan’s arm was swollen and painful after school today, we headed for acute care. Bang. Broken arm.

This was too awesome to retain for the next, more distant, blog post, so I’m attaching it here as an addendum to this morning’s post. I’m convinced that this represents a backlash on the part of the fairy guardian of-siblings-who-bracket-the-middle-child. Clearly, she read that last post, interpreted it as pro-middle child, and took action. So, all of you, please re-focus your attention on Tristan, or on Tomas. Otherwise, the fairy is going to sick a rabid golfer on one of us. I mean it.

How we roll

Tuesday, May 29th, 2018

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Our family of five converged over the long weekend in San Francisco to watch Tomas play a soccer tournament. Our means of converging was somewhat unconventional. Gary and Tristan arrived via private jet, courtesy of Anthem Blue Cross; Tomas hitchhiked from Kneeland; and Phoebe and I arrived from Washington, Dulles via last-minute, emergency bookings. Somewhere along the line, there were threatening sounds in the dark from a fearsome mountain lion and there was an attack by an aggressive pocket gopher in an otherwise friendly children’s park.

What THE HELL are you talking about, Toni?

Nope, I have not been smoking Humboldt’s finest. This is just how we roll. Where to start…

Let’s start with Phoebe. Phoebe is The Middle Child, which means her brothers get all the attention and she is ignored while she quietly draws or reads or makes herself pancakes or colors her white dog pink with sidewalk chalk. Her only recourse is stick tightly to a worrisome diet of unadulterated carbohydrates – white rice with nothing on it, pasta with nothing on it, roasted potatoes with nothing on them – with only the occasional chicken nugget for protein and a side of raw parsley for green. That draws our attention, but, other than that, this middle child falls between the cracks, just like so many other middle children. Huh, funny, I haven’t seen Phoebe for a while…maybe for a few days…

So, somewhere between the 9,000 hours spent watching Tomas play sports and Tristan’s Easter weekend hospitalization and frequent trips to UCSF, I thought it would be a good idea to plan a special trip for just Phoebe and me. We decided that, after I finished my classes in May, I’d pull her out of school for a week and we’d head to the East coast, where I would show her my hometown, introduce her to old family friends, and hit the museums on the Mall in D.C. We would then meet up with Gary and the boys in San Francisco over the Memorial Day weekend to watch Tomas’ soccer tournament before driving home together.

But enough about that middle child. Let’s quickly shift our focus back to one of her brothers. A few days before our departure date, Tristan, who never really shrugged off the Easter cold, spiked a fever early in the morning. On UCSF’s urging, we spent a few hours in the ER at the Eureka St Joe’s getting yet another chest x-ray, blood counts, and blood cultures. We were discharged when everything came back looking fine. Over the next few days, the upcoming trip with the middle child was uncertain, but the fevers subsided and Tristan looked great by the end of the week.

Phoebe and I departed for Newark on Saturday the 19th. We rented a car at the airport and drove to good friends in Pennington, where we spent three nights in their lovely house. Phoebe was enchanted by the black squirrels and red cardinals at the bird feeder visible through the kitchen window. For two full days, I took Phoebe around the Princeton area to visit friends, including many old friends of my parents and their kids with whom I grew up, parents of my school friends, and my favorite childhood babysitter. I showed her a bit of the university and the town, as well as my schools and my old house on Moore St.

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On Tuesday, we left New Jersey and headed for my Aunt Zsuzsa’s place in Chevy Chase, Maryland. After Zsuzsa fed us lunch, she took us on a wonderful driving tour of DC. The drive culminated in a torrential electrical storm, with a black sky, sheets of rain, and rushing rivers of water in the streets. I was glad I wasn’t driving! Back at Zsuzsa’s apartment, we had a comfortable, quiet evening while Phoebe and I planned our adventure for the following day: seeing the natural history museum, the exhibit of the first ladies’ inaugural gowns at the American History Museum, and maybe, if we could fit it in, the Air & Space museum.

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As it turns out, this middle child was receiving too much attention, so the fairy guardian of siblings-who-bracket-the-middle-child intervened. Wednesday morning, as we prepared to head to the Mall, Gary sent a text. Tristan had spiked a high fever early in the morning, and he and Gary were in the ER. To top things off, when Gary quickly fed the horses and let the chickens out pre-dawn, before heading to the hospital, he heard a mountain lion growling somewhere in the not-far-enough distance. He had woken Tomas to tell him what was going on with Tristan and to explain that a neighbor would pick him up for school later, but, after the lion sounds, he scribbled a note on the kitchen table telling Tomas to stay inside until his pick-up arrived. Never a dull moment.

On the DC end of things, I was falling apart with worry over Tristan, and a nagging sore throat that I had felt every morning since arriving East suddenly blossomed into a raging infection. Gary and Tristan were in ER limbo – the requisite four or five hours in that dreaded place when nothing happens, nobody really tells you what’s going on, murky plans change over and over again, and you’re bored out of your mind and extremely uncomfortable. As Phoebe and I had breakfast, bits and pieces of news reached us: Tristan had a chest x-ray that confirmed pneumonia; he was blasted with IV antibiotics; maybe he would stay at St Joe’s but maybe he’d need to go south to UCSF. I was sort of out of my mind about the whole thing, but, until we knew what Tristan’s plan would be, Phoebe and I decided to forge ahead with our plan for the morning.

Poor Phoebe. As we walked through the loud, crowded natural history museum, I was getting phone calls from UCSF and text messages from Gary. The plans kept changing. In front of a shaggy bison, I learned that Tristan would be admitted to St Joe’s for at least a night to make sure his breathing was okay…near the giraffe splayed out to drink at a watering hole, no, they needed to go to UCSF…by the howling wolf, change of plans, they’d stay in Eureka. At one point (in front of a boa skeleton) it seemed settled that Tristan was perfectly stable and UCSF was happy for him to stay at St Joe’s while they managed his care over the phone with the St Joe’s doctors. With that news, I managed to relax a bit as Phoebe and I made our way through a fabulous live insect exhibit and butterfly room. Phoebe loved it when butterflies landed on her, and she stood very still. That was the high point, but, somewhere between the natural history museum and Melania’s white slit-skirted inaugural gown, St Joe’s said, sorry, we don’t know how to take care of pediatric oncology patients and we’re way understaffed and we don’t feel comfortable with your son here and you should go to UCSF. Worse yet, he’d need to be med-evaced down.

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We made our way through the gowns, and then through a really neat neighboring exhibit on transportation, with whole train cars and city buses and a 1950’s camper van on display. My head was not there though, and my throat hurt, and Phoebe said she was tired. We agreed to head back to Zsuzsa’s after a ride on the merry-go-round. Sweet Zsuzsa picked us up on the Mall. I spent the ride back to her place on the phone with United trying to figure out how to get back to Tristan as soon as possible.

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Phoebe and I flew out of Dulles early the next morning, having scrapped the final leg of our trip – two days in Pennsylvania with three generations of very close family friends who haven’t seen Phoebe since she was a tiny baby. We arrived at SFO, grabbed our luggage, and took a taxi straight to the children’s hospital. We arrived to a cheerful, pink-cheeked Tristan and a rumpled, exhausted Daddy. Phoebe and Tristan were happy to see each other and I was relieved to be there and to see that Tristan looked so well. He hadn’t run a fever since the night before.

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Not long after we arrived, Tristan was discharged from the hospital with the recommendation that we stay in town for another day or two. We moved down the street to Family House for the night, dined on take-out from the nearby food court, and hung out in a common room where Phoebe helped a little boy with his homework and Tristan shared his new art kit with another child. We watched movies and went to sleep early.

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The next day – Friday – after I made a visit to UCSF’s acute care clinic for a strep culture and antibiotic prescription, we had lunch in the food court, played in a park, and made our way to the Millbrae hotel Gary had reserved for his soccer tournament weekend with Tomas. As we parked the car in the hotel lot, Tomas’ schoolteacher pulled up behind us to deliver Tomas. (He didn’t really hitchhike – his teacher was bringing her kids down to the same tournament. But almost!) And there we were, all five of us, together in the Bay Area for Tomas’ soccer tournament, arrived via private jet, last-minute booking from Dulles, and delivery by neighboring Kneelander. It’s how we roll.

Saturday was gorgeous and sunny and breezy, and we headed for Crocker Amazon Park to watch Tomas play. But, because things are how they are for us, before we got to the games, Tristan was bitten on the finger by a pocket gopher. Yeah, that’s right. Bitten by a goddam gopher. Med-evaced from the clutches of pneumonia straight into the jaws of a pocket gopher. As I sat on a bench in a sore throat / penicillin fog, Tristan and Phoebe made friends with a bunch of kids. Soon bored of playing with a bouncy ball, the kids found an abandoned milk crate and devoted their attention to trying to capture one of the cute fuzzy little gophers that were popping their heads out of burrows. I did say, Hey, don’t get bitten, but nobody listened. As we were leaving the park to see the start of the first game, Tristan couldn’t resist poking one of his adorable little fingers into a gopher hole. Suddenly he was howling, tears streaming down his face, holding tight onto his finger. “Mommy, I got bitten by a gopher!” he screamed. I turned around and looked at him. Seriously? I thought. I mean, can this really be happening? I envisioned the pocket gopher massacre to follow, the public health department teaming up with Fish & Wildlife to trap and rabies test the park’s whole gopher population. (The city’s gardeners would be happy – the park looked like a pitted mine field.) I imagined the response at UCSF’s ER, when I told them my cancer kid had just been bitten by a wild animal…and that I HAD LET my cancer kid get bitten by a wild animal. I pictured Tristan undergoing the rabies treatment, which I’ve been told is no fun. Can they even give it to an oncology patient? Dunno. And you know what? I was FURIOUS. I stomped back toward Tristan and demanded that he show me the finger. He released it from the tight grip of his other hand and held it up. Nothing. Not even a mark. I yanked the hand sanitizer I had just lifted from Family House out of my purse and squirted buckets of it onto both of Tristan’s hands. I smeared it all over his grubby little fingers and then I wiped his tears away with my sleeve. I asked him if he was crying because it hurt or because he was scared. Scared, he said. Phew. A disaster narrowly averted. Very, very narrowly. I feel like I live in a connect-the-dots between disasters! This is just how we roll.

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I hope you’ve enjoyed Phoebe’s illustrations and narration of our trip, above. She’s actually a pretty good speller, but her interest in the written part of the journal was minimal, and she, too, was distracted. Needless to say, Tristan was not bitten by a golfer, and, as far I as know, we did not fly over any oceans to get from Dulles to SF. Those discrepancies, however, add some richness to the story, I think. Also, given what our lives are like, either of those things could happen anytime. It’s just how we roll.

Of other news:

In early May, Tomas and I made a trip down to San Francisco to pick of his Certificate of Citizenship, which had been over a year in the making. (He’s had a US passport since he was a baby, but we were urged by a non-profit specializing in international adoption to get the CoC; under the current political climate, they said, only the Certificate is the true and undeniable stamp of citizenship.) He and I had a wonderful day and half in the city during which we ate a lot of excellent Chinese food. Best of all, on the street we happened to bump into a tour group of Indonesians and have a chat with them while waiting to cross an intersection. They chuckled at running into a Bahasa-speaking American and crowded close to take selfies with Tomas and me.

Tristan and Phoebe continued to enjoy t-ball and softball, respectively, and Phoebe tested for her blue belt in karate. There were some tough forms she needed to learn for the new belt, and she worked hard to get them down.

And now, a bittersweet note to honor the passing of my mother’s dear friend, Ann. She died very suddenly just a few days after Phoebe and I visited her and her husband John in Princeton. I’m grateful that I was able to see her again, and that Phoebe was able to meet this gracious, kind, smart, and funny woman. She looked terrific and had the same spark and spirit I remember from my very early childhood, when I played with her son Scott and Nikki was friends with her daughter Jenny. She’ll be remembered fondly and missed by many.

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Penultimate anesthesia & Spring news

​Wednesday, April 18th

Today is a big day! Tristan is in the OR right now for his penultimate spinal tap and intra-spinal chemo. After this, only one left, in July. As always, my five-year old was cheerful this morning, even after being dragged out of bed for a chilly stroller-ride from Family House to the hospital, deprived of breakfast, and denied the opportunity to play on a UCSF iPad when the internet in the OR frizzled out.

As we made our way from point to point in the hospital – coffee for Mommy, check-in at the security desk, another check-in at the OR desk – people in the lines and behind the counters kept commenting on how big Tristan is, and how smart, and what a great kid. He is, and I’m so proud of him. Does he recognize the enormity of what he’s been through? Dunno. He’s very matter of fact about it. Without a hint of stress or complaint, he’ll say:

“I’m going to UCSF today with my mom for chemo.” Or,

“I had leukemia.” Or,

“They had to poke me in the arm three times yesterday.”

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We’re back in our room at Family House now. Tristan woke very quickly in OR Recovery, demanded the chocolate chip cookie we had packed away for post-procedure, and then was ready to blow that popsicle stand. I was a bit worried about the quick wake-up because, at our last OR visit, Tristan awoke too soon and had what’s called emergence delirium – he was kind of bonkers. I was extremely alarmed and thought for a while that he had brain damage. Then he fell back asleep and woke up just fine. This time around, no signs of delirium, thank goodness. Our appointment at the infusion clinic for IV chemo is not for a few hours, we we’ll rest here at Family House until then. Tristan is playing games on my phone while I type on my laptop. I’m consumed by the wonderful thought that we only have one more OR visit lift. Just one more. And just the other day I booked Tristan’s last appointments for chemo at the clinic. The very last one will be September 6th. It felt like a big deal to schedule that last appointment.

I spend a lot of time thinking about what I am going to do with my life when Tristan is done with treatment. I’m not stressed about it – it’s a good feeling to contemplate life post-pediatric cancer. I’m older and uglier, but I’m stronger and smarter. I think that something good is going to happen. This stuff I’ve been doing since Tristan’s diagnosis –  taking classes, teaching classes, karate, running, writing this mess of words – it’s all leading somewhere, I think. I’m not envisioning myself as a blackbelt-wearing professor of blog-writing. This is all going somewhere,  I’m just not sure where yet.

We’ve had lots of good, “normal” stuff happen since I last wrote in January, and we’ve had some bumps, as well.

The good stuff includes the Spring start of baseball…and softball…and t-ball. It’s a triple header. Three kids, three different sets of practices. Once Gary and I finally did the math (three children with practices at three different locations ≠ two parents with two cars and two jobs), we hired the kids’ grown-up cousin Olivia to equalize that equation. So, a few afternoons a week, the kids are whacking balls and running around the diamond. All three seem to be enjoying it. At Tristan’s first t-ball game he appeared to be playing shortstop…and every other field position. He got a lot of action.

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When they don’t have ball in the afternoons, Tristan and Phoebe have karate. Last week Tristan tested for his Orange Belt. For each belt, the kids must learn a pledge. When Tristan was asked to give his, he did it like a professional orator. “I promise to never use my skill just to hurt or make someone afraid…” he said loudly and clearly. Phoebe will soon test for her Blue Belt. Last month, I received my Blue Belt and celebrated afterward over a margarita at a Mexican restaurant with my karate friends, a motley crew including a huge, shaven-headed casino bouncer, a butcher, a college student, and the grizzly bear-sized and -shaped master. Always a good time.

 


Phoebe has a new puppy, a white Australian cattle dog with black freckles. Skade, named for the Norse goddess of winter, snow, and mountains, is small and shy, the runt of her litter. She is very smart, cocking her head to the side and listening intently and intensely to every word I say when I face her, look at her eyes, and talk. I’m hoping to spend lots of time working with her this summer – I think she could be a fantastic dog. Phoebe and I still miss Pablo intensely. Sadly for Phoebe, Skadie is not a snuggly lap dog, though her breed is surely better suited to our remote mountaintop than was Pablo’s.

 


Tomas joined Gary in late February for a two-week trip to Indonesia. It was a special trip, long overdue. (The two of them had planned a trip to Indonesia together for late July 2015; the trip was scratched after Tristan’s diagnosis.) On this long awaited trip, Tomas had a fabulous time, reconnecting with old friends, eating nasi goreng, visiting Bogor, surfing in Bali, and doing a bit of cultural tourism. Of special note, he spent time with Mimin and Tini, our terrific helpers while we lived in Bogor who were both very important parts of Tomas’ early years, and critically-important parenting instructors to Gary and me. (I’ll never forget Mimin saying to me, “Ibu, I really don’t think he needs another nap right now. He’s already had five today.”) Tomas also spent time with India, who now lives on Bali with her parents; India was one of Tomas’ cribmates at Mekar Lestari, the orphanage where he spent his first ten months, and she was adopted by Australian friends of ours who lived just down the street from us in Bogor. Tomas and India spent years playing (and fighting) daily. In addition, Tomas spent time with Rik and Rafa, two boys from Mekar Lestari who were adopted by a Dutch couple with whom we became friends via the informal adoption network. Tomas seems to really enjoy seeing these kids and to feel a connection to them. I hope that, although they see each other infrequently, as they grow up, these four can reach out and find each other if they need to.


This semester I’m doing a combination of teaching and taking a class on both of our local campuses. At Humboldt State, I have a very small, easy, and fun position teaching one Mammalogy laboratory a week. What a pleasure, compared to last Fall’s introductory zoology lectures to 97 students! At College of the Redwoods, our local Junior College, I’m taking Microbiology. I find it fascinating, and I whack myself over the head regularly that I steadfastly avoided classes with a molecular and cellular focus when I was in college, proudly sticking to the organismal stuff. Why on earth did I do that? This teeny tiny stuff is so incredible! I absolutely love it. Also, I very much enjoy the bouncing back and forth between the two campuses and interacting with students and faculty in the two capacities, as teacher and student.

And now for the bumps.

I’m sad to write that Mia, the kids’ distant cousin who was born with a bad heart, passed away in February. After a month on life support, and liver malfunctions that caused blood clotting and circulation problems, and a brain MRI that brought only the worst news, they let her go. Tristan and I saw her one more time in the hospital in late January, when she and her parents were still fighting for her to live. It wasn’t easy to see. I held her mom’s hands and told her again what a warrior she is, and that she’s just going to keep hammering metal patches onto her heart so she can go on. She got it. When I saw her at the memorial in February, Cierra had a new tattoo on the front of her shoulder – an EKG line blipping up and down. A new badge of honor for that warrior mom.

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In March, after many complaints of mild pain in his legs and a couple of episodes of extreme pain, UCSF ordered up an MRI on Tristan’s legs. We went down to San Francisco a day early, taking Phoebe along with us, and had the MRI one day and chemo the next. Tristan was a pro in the MRI. With a “big” Lego hanging in the balance, he was willing to hold still for as long as it took. Unfortunately, the MRI showed a small area of avascular necrosis (bone death, in English) in each of Tristan’s tibias. Part of Tristan’s treatment protocol involves monthly pulses of high-dose steroids, and steroids can cause problems with the blood supply to bones. UCSF hadn’t expected it – it’s more common in older kids on steroids, and it’s more common in girls. They are adamant that what they see in Tristan is TINY, a degree sometimes seen in regular folks not on steroids, and that he will recover fully from it. The upside is that he’s off of steroids for good. He’s so close to the end of treatment that they won’t put him back on. We’re done.

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The week before Easter I caught a cold, which I then passed along to Tristan. His cough led to high fevers that put us in the St Joe’s ER in Eureka three nights in a row, Tuesday, Wednesday, Thursday, which was a fairly miserable experience. On the first day, my UCSF triage card, which should give Tristan immediate access to a safe space in the ER, got us about as much attention as my library card would have, and we spent almost two hours in a jam-packed waiting room. Fortunately, Tristan didn’t fuss about wearing a mask. He was so feverish he didn’t even notice. The hospital was so full that it was shipping patients to other hospitals as far as six hours away. Some refused to go, and were squatting in the ER until inpatient beds opened up. Miserable. On each visit, we had Tristan’s blood counts done and blood cultures started. On the first, chest x-rays. His neutrophil counts fell from day to day. On the third night, we were placed in an ER room that had a private bathroom attached. The toilet was clogged with a towel. That was it. On Friday, after hearing these stories, UCSF told us it was time to come down. I packed, drove us down, and checked us in. We spent Easter weekend in the Children’s Hospital. Tristan alternated between spiking fevers and watching movies. I alternated between studying for a Microbiology exam and snuggling Tristan. He was given doses of IV antibiotics, chest x-rayed again, and watched like a hawk for secondary infections. When he was given terrible, awful, painful double injections in both arms at 3am, after the IV slipped out and antibiotics were ordered, Tristan yelled as the tears streamed down his face, “Curse you! Curse you!” at the nurses. I’ve got to hand it to him, the kid’s got a good grip on language. On Easter morning, the doctors pronounced us good to go and sent us home. The fevers disappeared, the cough dried up, the blood counts bounced back up, and the little man is okay. Apropos of my Microbiology class, I emerged from these ER and hospital visits with a mysterious cellulitis infection in my leg, which fortunately resolved after a course of doxycycline. I have a new and rapidly growing appreciation for bacteria.

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It’s time now for Tristan and me to walk back up to the hospital for his chemo infusion.

Now we’re at the infusion clinic. The doctor just signed off on Tristan’s chemo, and while he gets his medicine, eating a cheeseburger with one hand and playing on an iPad with the other, I have one more event to relate. Early this year, I got an email from the Make A Wish Foundation, asking if Tristan and I would be willing to speak at a MAW fundraiser in Eureka in early March. Tomas and Gary were in Indonesia at the time, so Phoebe, Tristan, and I attended the event. I was mildly appalled that there were about 300 people in attendance (recall that I am terrified of public speaking and was only partially able to squelch my anxiety by doing a total immersion lectureship last semester), but I pretended I wasn’t me, walked up to the podium when I was summoned, adjusted the microphone like I knew what the f*%# I was doing, and gave a four-minute speech. I talked about how, while Tristan and I have been on this crazy adventure, we have had overwhelmingly positive encounters and experiences with warriors and caregivers and people who simply make us feel good, and how the Make A Wish people and our MAW trip simply made us all feel good. After I finished my talk, the Country Supervisor, who was MC-ing the event, pulled a chair up to the mike. I lifted Tristan onto the chair, and he gave a rousing two-minute talk, complete with hand gestures and emphasis, about his wonderful trip to Hawaii. He was followed on the chair by Phoebe, who was pure sweetness as she related her encounter with dolphins and a noteworthy peanutbutter-and-jelly sandwich at a nice café. As we left the podium, the huge audience gave the kids wildly enthusiastic applause. By all accounts, the fundraiser was a success; the money raised will be used to send other local Make A Wish families on their wish trips.

 


Tristan’s chemo is finished, and the nurse is removing his IV. We’ll head back to Family House to rest for a few hours and to build a wooden scorpion puzzle prize from the clinic. Then we’ll taxi to the airport for our late-night flight home, which will get us there a few hours before I get up to head to my Microbiology class.

And some more photos…

 

 

 

 

Humping gecko cake and a tough Fall

January 8, 2018

It was a long Fall. There were some good parts, but there were enough hard, even awful, parts that I’m ready to bury the whole season. Remove it from my brain and my heart, put it all here, and move on.

I should start with the good stuff. In September, Tristan turned five! We had his birthday party on a Friday afternoon. His classmates took the bus home with him, and several of his preschool friends and school-in-town friends arrived later, chauffeured up the hill via mom limo. The kids ran around screaming, snacked, put on costumes, did a treasure hunt for plastic lizards and frogs, and smashed a piñata that Phoebe had constructed from a cardboard box and colored paper. The moms drank wine and ate the potato chips meant for the kids.

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The highlight of the party was the unveiling of the birthday cake from its bakery box. Tristan’s cake decoration request had been specific: two geckos, one a mom, the other a baby. For each kid birthday, I order a cake from a wonderful café / bakery in town. Every order involves a long conversation with a barista, who jots down detailed notes on an order sheet about the cake flavor, icing, filling, and decoration. They always get it just right. We’ve had soccer balls, baseball diamonds, fawns, ponies, and firetrucks, each one even better than imagined. Tristan’s birthday cake, too, was better than imagined, but not quite what we ordered. As I presented the cake, the moms paused mid-sip of wine, mid-crunch of potato chip. There was a brief silence. The green lizards adorning my five-year old’s birthday cake appeared to be humping, the eyes of the humper hungry and wild, those of the humpee rolling back in delirious pleasure.  “Huh,” I said, “It kind of looks like these geckos are fornicating.” Laughing, we toasted the humping gecko cake, stuck in the candles, and called the kids (who admired the reptiles and took no note of the sexually explicit nature of the cake) to the kitchen for the birthday song. We devoured the delicious cake. Since then, I’ve wondered about the baker who decorated that cake. Is she an aspiring author of steamy romance novels who, as she painted green icing onto the cake, was lost mid-thought in the urgency of handsome, dark Eduardo’s efforts to untangle the laces of swooning Stephanie’s bodice? She most certainly was NOT in the five-year old kid frame of mind. We all look forward to the next cake from this bakery, which will be Phoebe’s next month. I hope the baker hasn’t taken on a new S & M writing project. I should probably preview future cakes before making them public.

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All three kids played soccer through the Fall, Tristan and Phoebe in a local league and Tomas on a competitive traveling team. Gary took on most of the travel with Tomas. I was sad that I wasn’t able to see him play much, but it was a pleasure when I did. Tomas was a captain of the team and played a very solid defense through the season. Tristan and Phoebe both blossomed on the field this year, enjoying their practices and interactions with their teammates. Phoebe tried out the goalie position a few times and loved it, and Tristan had a few games in which he fired one shot after another into the goal.

Both Tristan and Phoebe continued to take karate lessons. Phoebe is now an Advanced Purple belt, and Tristan will soon test for his Advanced Yellow belt.

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Somewhere in between the good and the bad of the Fall was my crazy new job – a lectureship at Humboldt State University. Through the semester, I gave three lectures a week to 95 students of Introductory Zoology. If writing and delivering about 40 lectures to almost 100 students doesn’t already sound nuts, perhaps I should disclose that I have a pathological fear of performing in front of audiences, and that I have always done everything in my power to avoid this. I’m not sure what possessed me, but in June, when I was offered the position by HSU, I decided to take it on as some sort of intensive personal Toastmasters challenge. I started writing lectures in July, and I finished writing the last one a few minutes before the very last class. It was an all-consuming, huge project, and I am glad I did it. I learned a ton and defeated a few demons. Best of all, I shared a tiny, pantry-sized office with two other women, both PhD Biologists who also were lecturing, and I adore them both. With not an inch to spare, we held our office hours crammed side-by-side with students and with each other, spilling out into the hallway. We laughed about our dismal pay, complained about the totally un-ergonomic, institutional, green naugahyde chairs that gave all three of us aches by the end of the semester, and drank mimosas in the office on the last day of classes.
On the down side of this experience, I was stunned by these millennial students with their enormous senses of entitlement. One student told me in scathing email that her learning should be fluid, without struggle. The word she used was “seamless”; she should be able to seamlessly read from slide to slide without having to cross reference with other lectures, work through seeming inconsistencies, or muddle through confusing bits. Mind you, this is in regard to the PowerPoint lecture files that I PROVIDED to the students. Were any of you who are above the age of 30 ever GIVEN a copy of any of the lectures you attended? This is now standard practice, something to which the students feel they are entitled. Ugh. It was hard to come to know this new kind of student. I did have some fantastic, hard-working, appreciative students, but many were of this “seamless learning” variety.
So, now on to the dark parts of the Fall, the parts I need to bury. There were four terrible things that happened this Fall, some of which began in September and about which I began to write in my last entry. They are, all of them, so painful.
First, after my friend Susan’s son Noah was hospitalized for an excruciating intussusception (telescoped gut), which resolved on its own, he relapsed again. His leukemia came back, a second time. His doctors hit him hard with another round of chemo, extra mustard, and then they nominated him for Car-T immunotherapy, a new gene therapy that was FDA-approved at the end of August. He was selected, and even insurance-approved for the half million-dollar treatment. Susan said the treatment took ten minutes. We talked about all the years of chemotherapy, all the needle pokes, all the anesthesias, and, in their case, the radiations. Then, ten minutes in the clinic, while Noah’s modified cells were squirted back into his veins. I wish I could say it worked. It didn’t. Noah is cancer-free right now, meaning that no cancer is detectable in his body, thanks to the last round of chemo, but it’s clear from his blood counts that the Car-T did not do its thing. Now they wait. Maybe they’ll be lucky. Maybe the last chemos sniped out the remaining cancer cells.

And then there’s Mia, Gary’s nephew’s baby daughter with the colander heart. So many holes in it that it’ll never really work like a proper heart. That sweet baby has done well over the last few months. She’s nursed, and she’s grown, and she’s got a beautiful head of black hair. At a family birthday party for Tristan at Noni’s house, we marveled at her chub and I was so happy to see how well her mom looked – lovely and composed and not like the ghost with whom I’d sat in the hospital. I could see that she’d become a Warrior Mom and that, one foot in front of the other, she was doing what needed to be done. After growing stronger and bigger, a week ago Mia had her first open heart surgery. A first step to create for her a unique, working heart. Three days ago Mia coded. She now lies, with her chest open, on a bypass machine and a ventilator. In a day or two we will know if her heart has recovered enough from the surgery to beat on its own. I’ve sent text messages to her Warrior Mom, and haven’t heard back. She is busy holding her baby’s hand, and, I hope, taking a moment here and there to let the iron scabs form on the freshly broken bits of her own heart.

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And now there’s something so terrible that I don’t know where to start. I just have to plunge in. In mid-September, Kneeland friends of ours, a family of five, were vacationing on a friend’s houseboat on Lake Shasta when their three-year old daughter went missing at bedtime, after life preservers had been shed for sleeping. They found her toothbrush floating on the surface of the water next to the boat. In borrowed scuba gear, in the dark, the father dove to the bottom of the lake, to about 70 feet depth. Somehow, he found his baby girl, and he scooped her up and brought her to the surface. I don’t know any of the details, and so I can only imagine what ensued. The girl’s mother, my jogging and playdate friend, is an ICU nurse. I imagine that she breathed air back into the child’s lungs. Then there was a med-evac to UC Davis. And then there was month of waiting and hoping, with just enough good news now and then to make her doctors and parents believe that there was some possibility. In the end there was no hope, and, after a month, the life support was disconnected. Our friends lost their beautiful, mischievous, curly-haired baby girl. The memorial was sweet and beautiful and very painful. At a reception afterward, tiers and tiers on tables and tables were covered with pink and purple cupcakes decorated with butterflies, the child’s favorite. I will never forget it.

Finally, as if the pain of the above wasn’t enough, Phoebe’s beloved pup, Pablo, disappeared the day after our friends lost their daughter. I am by no means equating the loss of a child with the loss of a dog, but the timing was awful and the loss more poignant, at least for me, because I was so raw from all the other stuff going on. Initially Phoebe was not very distressed – we hoped Pablo would just show up after a few days’ jaunt, and we put up posters on trees and poles and posts on social media – but, when she realized he probably wasn’t coming back, she was devastated. He was a fabulous dog, a cuddling expert who gave Phoebe all the wiggly, canine attention she could ask for. I miss him terribly, too.

Now it’s time to bury all this. It’s a blog burial. A WordPress funeral. Moving on.

The kids went back to school today, and I have a whole week before I launch into the next phase. I am relieved to report that I will not be doing such an extreme version of personalized Toastmasters as I did last semester. Humboldt State offered me a small, low-stress position for the semester, teaching one Mammalogy lab a week. A great opportunity for me to review a topic once close to my heart and brain, but off my radar for more than a decade. In addition to that small teaching position, I’ll again take a class – Microbiology – at the local junior college. I’m looking forward to the class, and to again spending time on the JC campus; I enjoyed it so much last Spring when I took Physiology there.

Tomas and Gary will go to Asia together in late February for a few weeks, a long-awaited raincheck trip to make up for the Indonesia trip they cancelled just after Tristan was diagnosed in 2015. Tomas is very much looking forward to it.

For Phoebe I am hunting for a puppy, one qualified for cuddling but perhaps better suited than is a Chihuahua to living on Kneeland, where the mountain lion population has reportedly exploded over the last few months.

Tristan has been growing like crazy. He’s very tall, he’s smart​, and he loves school​, features not shared by all kids in their third year of chemotherapy. He has only nine months of treatment left, and only three more anesthesias. It’s still a while, but I can see the end now. I am really looking forward to no more chemo. Our marriage to UCSF won’t end yet, as we’ll have about five years of follow-up monitoring, but, honestly, I think we’d both be kind of sad to no longer see our doctors and nurses. Tristan would, for sure, miss the constant influx of Lego from both the infusion clinic and Family House. Better, for the sake of free Lego, we not yet divorce UCSF.

Onward!

And some photos from the last few months…

 

Warrior Moms

Saturday, September 9th

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Warrior moms have powerful hearts, part living, beating cardiac muscle, and part iron where the broken parts have been soldered together.

Warrior moms know how to flush a PICC line and check for return. With their eyes closed, they can fill a syringe with meds to the correct tenths of a milliliter and split pills into the prescribed fractions. Just like any experienced soldier, they can catch a few hours of sleep in a tight space under the worst circumstances, tuning out the sounds of beeps, flashes of lights, and rolling, churning mattress underneath. They know how to delegate: doc, maybe now would be a good time for you to chase down that radiologist and get that report, so I don’t have to keep waiting to find out if there’s now a new, bigger problem. And they don’t have to be told no food for the kid after midnight before an OR day. Yep, got it.

Depending on what battle they’re fighting, some warrior moms have shaved heads. Some spend their down time in the trenches sewing cool hats for their bald kids, or decorating those lovely, smooth, open canvases. Others cook, either trying to satisfy the gnawing hunger of their chubby steroid nutter kids, or hoping something might stimulate the appetite of their skinny children.

On Labor Day Monday, Tristan and I drove down to San Francisco for his chemo on Tuesday morning. In the 24 hours leading up to our departure from home, we learned that my kids’ new baby distant cousin-in-law-twice-removed-and-I-don’t-know-what-else (I’m not much of a genealogist), just born nearby in Humboldt County, was being med-evaced from St Joe’s down to UCSF with a heart problem. We also learned that Noah (Noah from Mill Valley, who has Tristan’s form of leukemia with a bad twist) was at UCSF with an intussusception — where one’s intestine telescopes on itself and causes excruciating pain. I was in touch with both moms, and our trip quickly evolved to include multiple social visits in the hospital.

Tristan and I arrived in Mission Bay on Monday at 3, after slogging slowly through the mire of returning weekend travelers clogging up the 101 past Petaluma. I had planned for us to visit Noah and Susan first, as Susan had sounded so miserable on the phone earlier, but the security desk had screwed up my name on the “guest list” and wouldn’t let me up to their room. So, by pure chance, we ended up first at the baby cousin’s room.

When Tristan and I slipped into the room, I could see Cierra, ashen, sitting with a doctor. The doctor explained that he was just beginning to “tell her what we’ve learned”. I realized that I had arrived precisely at the moment that the baby’s mom, on her own, was about to be given the prognosis. (I remember that hour well.) I asked Cierra if she wanted me to stay, or to come back later. She asked me to stay. So then I sat next to her, and I held her, and I smoothed her hair, and I put my hand on her back, and I watched her heart tear apart, as the cardiologist described her baby’s heart as what amounted to something sounding roughly like a colinder — holes everywhere. He told her that Miona’s heart will never work like a normal human heart, but that, through a series of surgeries, he will construct for her a one-pump heart that will get her, probably, to her twenties. By then, or possibly before, she will need a new heart. Either way, her life expectancy is short. And she won’t be an athlete.

The tears streamed down Cierra’s face, and I could see the pain ripple to every cell in her body, but she didn’t crumple into a little ball and shut down. She asked all of the right questions. I could tell that she’s going to grow a new integument of rhinoceros skin really fast. Tristan, who had listened to all of this, put his hand on Cierra’s shoulder and told her, over and and over, “Your baby will be alright! Don’t worry!” I wasn’t exactly sure what to do with that, so I let it happen. It didn’t make any sense given what we were hearing, but it was the right thing for my son to do.

After the doctor left, Cierra cried, and we talked. Best of all for everybody, the baby nursed. She’s not in pain, not suffering. She’s a beautiful, black-haired, rosy-cheeked, good baby. I told Cierra that lots of people live 99 years and have a shitty day every day of their lives; this baby is going to have a happy day, every day of its life, filled with warmth and love and joy. That’s what matters. Doesn’t actually really matter how long that life is.  And I told her that tonight will be the worst night of your life, but that tomorrow you will get up and start the rest of your life. You will make a plan, and you will go forward with it one step at a time. And when she said, this is so unfair, and I’m so angry, I said that’s why you’ll come to karate with me with you get back home to Humboldt. Okay, she said.

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I remember that first night. That night I folded myself around Tristan inside of his crib in the PICU. I stayed there for many hours. I circulated through my tattered heart all of the things people told me had to happen: You will have to move to San Francisco. You will have to sell your house and bring everybody down here… Then I got out of the crib and slept for three hours, solid, on the fold-out bed. When I got up, it was the first day of the rest of my life. I think there were already a few bits of iron in my heart. And I had a plan. The plan did not involve uprooting my family. And it worked fine.

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We left Cierra nursing the baby, working up the strength to call the baby’s daddy. Without consent from the security desk, we hopped hospital floors from Cardiac over to Heme-Onc, where Susan and Noah happened to be in the same room Susan was in with Noah’s sister Maisie when she was diagnosed with type I diabetes last Thanksgiving. That was roughly a year after Noah’s relapse. How ‘bout that? You should see Susan’s heart. It’s got iron patches all over it. But she’s been through so much, sometimes she needs someone to come in with a soldering iron and help put things back together. I think I’m going to take a welding class.

We arrived in Noah’s room to find him writhing in agony and Susan in tears, having just received a half-baked report on the morning’s ultrasound that involved some mention of air in the wrong place in Noah’s abdomen. Tristan, who was coping, settled down comfortably with a gigantic chocolate pudding from the cafe downstairs. Susan disappeared into the bathroom with Noah, and I started to fall apart. But then the doctors arrived on their rounds. I could hear them lingering outside of the door, and I could hear the nurse tell them that Susan and Noah were occupied in the bathroom. I leapt to the door. “But don’t leave!” I said, knowing that it would be hours before they’d appear again. “They’ll be right out.” Susan called out from the bathroom, “Just tell them to pretend you’re the mom and have them tell you everything.” I ushered the doctors into the room, answering their questioning looks. We know them all, and they were wondering WTF we were doing in Noah’s room. I explained all that, Susan emerged from the bathroom, and they clarified that there was no report saying that Noah has air in his abdomen, but that that was a possibility they wanted to eliminate. (How on earth was it allowed for a doctor to tell Susan an hour earlier that somebody MIGHT have seen air in Noah’s abdomen?) The doctors were still waiting on the report from the radiologist. Then there was more blah blah blah, not particularly useful or informative. Finally, maybe because it’s easier to be pushy for someone else, I said, so…where is that radiologist right now?? Oh, he’s probably reading Noah’s images at this moment, they responded enthusiastically. Um, I said, so what if you guys chased that radiologist down right now, because, um, then Susan wouldn’t have to sit here thinking that Noah might have a hole somewhere in his intestines?? Oh, yes, right, good idea! We’ll do that! They were back in five minutes with the report. No hole, and the intussusception had resolved.. The pain is probably just inflammation from tissue damage. Nothing a morphine drip couldn’t take care of. Holy fuck.

We visited Cierra again after we left Noah and Susan, and then again the next morning before Tristan’s chemo. Her father was soon to arrive, and her partner the next day. Noah has since been released from the hospital with boatloads of pain medications.

That night we cancelled our early dinner date with Dudley Carlson, our librarian friend, as we stayed in the hospital much later than expected. Instead we ate a late dinner with a Family House friend, Coco, and her kids, in the food court across the street from Family House. Coco and I drank a liter of sangria while the kids played and Coco filled me in on the recent chapters of her divorce from a mean husband and her daughter Charlie’s treatment for an extremely nasty version of Tristan’s leukemia. They have not been able to leave Mission Bay since Charlie began treatment at the new year. When she begins Maintenance in a week, they will move down south with Coco’s mother, and Coco will open a salon. (She’s the one who did the beautiful henna work above.) I’m pretty sure that Coco has alligator skin, in addition iron patches on her heart. Ain’t nobody going to walk over her again.

Tristan’s clinic visit the next morning was smooth. While his chemo was being prepped, he played with a social worker and I chatted with Shawna, the mom of Olive, who also has leukemia. Shawna is big and loud and definitely tough. She was in good spirits. Although Olive and Tristan were diagnosed around the same time, Olive will be done in February. The treatment is a year shorter for girls. It’s in sight for Shawna.

Susan, Cierra, Coco, Shawna, and so many others I’ve met at Family House and written about…Della, Eva’s mom, Ivan’s mom, Rita…warriors. Me, too. We’re tough. We’re mean. We’re part rhino, part alligator, part iron. We go on. We don’t break. But it still hurts so fucking much. I don’t know what to do with it, so I put it here. And now I’m going to go running. I might practice some of my karate kicks and punches while I’m at it.

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The best hernia EVER

Sunday, July 23rd

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I’ve been celebrating Tristan’s inguinal hernia for three days. I’ve never been so happy about a hernia. Tristan’s intestines are hanging into his nuts, and that is the most fabulous thing I can think of. It’s AWESOME. I love inguinal hernias.

Why? Because on Thursday, from about 7:30 am til 6 pm, Tristan had cancer again. Ten and a half hours of cancer. A relapse.

For about two months, one of Tristan’s testicles has been swollen on and off. Knowing about the risk of testicular relapse in boys diagnosed with leukemia, a risk that was as high as 20% until a few years ago, I had told our doctors in the oncology clinic about the episodes of swelling. On both of our last two visits to the clinic for chemo, the doctors examined Tristan extra carefully. On neither occasion was Trista’s testicle actually swollen. The docs were unconcerned: relapse is usually very fast, the swelling is extreme, it is hard, and it does not come and go. The doctors felt strongly that what I was seeing was either a hydrocoel or a varicocoele – water or blood, both very common, and not dangerous unless extreme.

But about a week and a half ago I was worried again. The swelling was greater, and it had been persistent for a week or so. Over a weekend, I emailed Dr Sabnis, our main oncologist at UCSF. He responded that he was not worried, but that we should have it looked at while it was swollen, as there wasn’t much to be learned by trying to examine it when it was not swollen. He asked us to have our local pediatrician refer us for an ultrasound.

The referral came through this past Tuesday morning, and St Joseph’s kindly fit us in that very afternoon. They don’t see a lot of pediatric cancer, and, every time we’ve had hospital time in Eureka, they’ve bumped us to the top of lists, moved us right out of the ER waiting room, etc. I watched the ultrasound screen like a hawk, but is all looked like storm clouds to me.

Wednesday afternoon I got a phone call from a doctor at UCSF. She had just received a written report from St Joe’s. No images. St Joe’s does not have the technology to send the imagery electronically. The UCSF doctor was very reassuring. She explained that the text described exactly a varicocoele, sort of a tangle of blood vessels…but, she said, the last line in the report was: “Confirm for testicular relapse.” Before I could have a heart attack, she did some more reassuring, explaining that she was fairly sure that this was a case of St Joe’s, unfamiliar with peds oncology, being unable to separate the cancer from anything else that could be going on. They knew that we had the ultrasound because we were worried about testicular relapse. There was something not normal in one of Tristan’s nuts, so it had to be cancer. The doctor said she’s request the images, and promised to call me the next day. Believe it or not, I was reassured. There was no mention of needing to do anything more than simply wait for the images to confirm that this was no big deal.

Thus, it was a surprise – a horrible, terrifying surprise – when my phone rang at 7:20 Thursday morning and one or our UCSF outpatient nurses said, “So, we’d like you to drive down here…” I immediately went ballistic. I was convinced that she simply hadn’t talked to the reassuring doctor of the day before, and that this was some sort of cross-firing of information after the nurses had read the “Confirm for testicular relapse” line. I got off the phone to make other calls. I didn’t even know what calls to make, but I was thinking that surely there was someone who could explain that this was all wrong and everything was fine. At the same time I was pulling out a suitcase and starting to pack. Then Dr Sabnis called from UCSF. He did his best to be reassuring, but, he said, the report from St Joe’s contained the word “solid”. “If we see the word ‘solid’,” he said, “we’ve got to take a look at this”. He hung up to see if he could arrange an appointment with a urologist, who would, he said, be better than he would be at interpreting the images.

Sobbing, I packed for Tristan and myself. Remembering how, exactly two years and two days before that very day, Tristan and I were med-evaced to UCSF with a fairly random assortment of clothes jammed into a medley of shopping bags, I packed carefully. I had no idea if we were going down for a day, or if we were heading down to start all this all over again, or worse, to start radiation. I booked Family House, too. Maybe we’d be inpatient, maybe not.

Dr Sabnis called back to say the urologist would squeeze us in about 4pm, and could we arrive about 3, 3:30 to come first to the oncology clinic. Oh, and could we please go to St Joe’s, pick up the ultrasound imagery on a CD, and drive it down. Positively Stone Age, isn’t it? It was 8:30.

By this time, Gary knew what was going on and Tristan was up and dressed and eating breakfast. Tristan begged to take Phoebe with us. I promised him a Lego instead. He, of course, did not understand the terrible hugeness of the reason for our trip, and the reason Phoebe could not come.

We drove down our mountain, picked up the CD at St Joe’s Radiology, and headed south. Tristan watched movies, and, behind my sunglasses, I cried and cried. Tristan thought I was crying because we had seen a road-killed fox. I let him believe that. My kids think their mom is a freak anyway. That had to be better than telling him I was crying because I thought I was driving him to SF to have his nuts radiated.

That six hour drive was the worst six hours of my life. When, two years and two days before, we sat for hours in the St Joe’s ER waiting for med-evac, and then sat on the flight, and then rode in an ambulance from the airport to UCSF, I had no idea what was going on. I was tired, and I was worried, but I had NO FUCKING IDEA what we were getting into. We had been told we were being sent to UCSF for a biopsy that would help determine what was going on. I firmly believed that we would do the diagnostic tests, find out what was wrong and that it would not be a big deal, and go home. I did not for a second think that Tristan had cancer and that, well, that everything would change.

But on this drive, I knew exactly what were the possibilities we might be heading for. On this drive, I zoomed right back to two years ago. We were starting all over again, and it’s always worse the second time, or the third time, or the fourth. It gets worse and worse, harder and harder. The chemo scarier, the doses bigger. There’s radiation. They hit you harder, wanting to catch every cell, knowing they missed some of those tenacious little bastards before. As I drove and visualized the terror ahead of us, I also made big changes to my life. By the time we parked at UCSF at 2:45, I had quit my new job as a lecturer at Humboldt State (what the fuck was I thinking, taking that on already?), made significant modifications to my marriage, changed the way I parent, and shaved my head again. Needless to say, I was exhausted and my eyes were puffy and red as we walked into the medical building.

Thereafter followed three hours of hopping from one clinic to another. UCSF moved heaven and earth to see us in the oncology clinic, cram us into Radiology at 4:45 for another ultrasound (the one from St Joe’s was so bad it was uninterpretable – storm clouds!), and hook us up with the urologist after she’d had a full day in surgery. The whole time – for every minute of three hours – our social worker Jenee sat by my side, talking with me and playing with Tristan. Jenee lost a leg to bone cancer at 15 and had ovarian cancer in her 30’s. She’s definitely got credibility. Also, sweet, kind Dr Sabnis was in and out to be with us, and delivered tea and a snack, and then spent the full last hour with us. Tristan was amazing the whole time. No fussing, no complaining. He played games on a clinic iPad and chatted with Jenee and the doctors.

And in the end, after all of these good people had done everything they could as fast as they could at the end of a long day, we got an answer. I don’t think I could have waited until the next day. I would have gone nuts. No pun intended. The peds radiologist took one look at the fresh, new, high resolution ultrasound imagery and said, “That’s a hernia!” The urologist confirmed with an exam.

By this point I was numb and my brain was no longer working. “So…do we still need to biopsy Tristan’s testicles? Is there ALSO a solid tumor in there?” I asked. I think I might have believed for a moment that Tristan had a hernia ON TOP of cancer in his testicles. Dr Sabnis laughed. “No, no, there’s no cancer!” he said. We’ll come back to UCSF in a week to have the hernia repaired simultaneously with Tristan’s next intraspinal chemo – saves us one anesthesia.

I have never been so relieved or happy in my life. To celebrate, Tristan and I drove straight from the hospital to the Target on Geary to buy Legos, and then continued over to Agi and Chris’ to drink champagne and build a complicated Ninjago vehicle. We toasted to Tristan’s guts being in his nuts.

On the upside, this terrifying journey landed us in the Bay Area, where this weekend we are watching Tomas and his All Stars team play in the State Championships in Fremont. They are one of seven teams of the 250 All Stars teams in California to make it to States. The ten year old team also made it to States. Humboldt County may have crummy medical technology, but we sure do make good baseball players.

Getting us all here required quite a bit of coordination. As you know, Tristan and I arrived via hernia. Tomas spent the week near Oroville at a camp for siblings of pediatric cancer patients. Phoebe and Gary drove inland and down the 5 on Friday to pick him up at camp yesterday morning and sweep him down to Fremont. Tristan and I arrived at 11:45. Gary, Tomas, and Phoebe arrived at 11:59, with the ceremonies to begin at 12. We’ve got our timing down. In the blistering heat, Tomas’ team lost badly, but they seem to have a tradition of losing their first game in these double elimination tournaments. This afternoon they will play again, and they will come on doubly pumped up and ready to battle.

Other words about the summer:

It’s been intense and fun. I’ve been busy writing lectures in preparation for the job I mentally quit on our drive down to SF; Tomas has been earning money through mowing and other outdoor work, as well as playing lots of baseball;

Phoebe got her purple belt in karate, has done an outdoor camp and an art camp, and hosted a “Summer Party” for her friends last week;

Tristan has been having fun at preschool and building lots of Legos;

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and Gary has been working and driving Tomas to baseball tournaments in places that are too hot. The kids and I have had several river days, none of them involving accidents with boulders, I’m happy to say.

And finally, we appear to have won an important battle on the home front: the kids and I built a fabulous scarecrow that, so far, is keeping our permanently-resident pair of ravens from stealing a dozen chicken eggs a day. Our ravens have the glossiest, blackest feathers ever, thanks to their amazing diet. They are not happy with the new arrangement.

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Aloha!

​The following is a log of our trip to Hawaii over the last few days. The trip was a fantastic gift to Tristan from the Make A Wish Foundation, and it satisfied two of his three requests to (1) see a volcano, (2) swim with dolphins, and (3) collect octopus arms on the beach.

Friday, May 19th

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Oh my goodness. We’re here. The kids were FABULOUS on the trip…but flying from Humboldt to Hawaii is no easier than flying from D.C. to Hawaii. (I sat next to a man who was coming from D.C. We had both left home at the same time that morning.) The trip was LONG, and all five of us were VERY, VERY tired when we got here.

Make A Wish has spared no expense. We were picked up at home in Kneeland yesterday morning at 4am by a stretch limo. How fun! I had the kids sleep in their clothes, expecting to pluck them out of bed and dump them into the car. Instead they were up and cheerful and excited to ride in the fancy limo.

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We flew to SF, where we had three hours to kill. Tomas sunk his brain into the iPad, Phoebe and I went to a spa to have our nails painted while we sat in massage chairs, clicking on the different buttons to knead our backs into bread dough, and Gary stoically managed crazy Tristan.

The next flight was long for the kids, but we got through it without any major spills, accidents, or trauma. We were all exhausted.

We were greeted at the airport by a woman who put leis on us, and then we picked up our rental car, which is a gigantic white Tahoe SUV, almost big enough that our kids can’t fight in it, but not quite. (Again, why has nobody patented Plexiglass dividers for the back seat?) The car rental took about five minutes, which was amazing. (I have painful memories of long waits for almost every car rental in which I’ve been involved.)

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The Kona airport is on a gigantic lava field — all you can see is lava rock. It was pretty weird and amazing, sort of a Mars-scape.

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We drove to the hotel, only a few miles away but the traffic is very thick and slow. As far as I can tell, there is only one big ring highway that circles the coast of the whole island. It took about half an hour to get to the Aston. Everyone was in a good mood on the drive.

After a check-in that took a bit too long, we unloaded into our AMAZING two room/two bathroom/kitchen/ocean view balcony hotel suite. The kids were in heaven. Then we set out to eat (after learning that the hotel doesn’t have a restaurant — a minor disappointment). We found a great place, on a terrace facing the ocean, and Gary drank a gin and tonic while I tossed down a very good margarita. The food was terrific, and even Phoebe tucked into a GIGANTIC peanut better and jelly sandwich on homemade bread. There was some kind of finch or cardinal, black and white with a red head, eating our crumbs off of the floor. The Yellow-Beaked Cardinal, it turns out, introduced.

After lunch, Tristan and Phoebe and I swam in the hotel pool while Gary and Tomas volunteered to get some basic supplies at the store. Phoebe threw herself into the pool and began taking strokes (without bothering to try breathing) straight for the deep end. Before I could put down the towels and get my sandals off, Tristan followed her, jumping into the pool and TAKING STROKES for the deep end. I almost had a heart attack. Phoebe ended up where she could still stand. Tristan touched down where he could just stick his lips out out of the water to suck in a little air. Of course, all of this happened in less than two seconds and I was there to haul Tristan in. He was only a TEENY TINY bit freaked out that he almost drowned himself, and actually the whole thing was sort of funny. His split second imitation of Phoebe was incredible. Thereafter followed a short conversation about water safely. Phoebe then played in the pool for a long time, and I encouraged her to practice taking some breaths. Tristan did cannonballs into the hot tub (which was otherwise unoccupied). The pool area was in shade and it was breezy, so I was cold and mostly sat in the cannonball zone to keep warm.

We went back to the room, showered, and put pajamas on. It was about 5:30. Gary and Tomas came back. Gary and I had some wine, the kids watched TV, and we were all zombies. To bed before 8pm. It’s now 6:30 on our first morning. Phoebe is still asleep, the boys are watching TV, and I’m about to pour coffee for Gary and me. I’m hoping we will drive this morning to a gentle, sandy beach. (The beach in front of the hotel is volcanic rock and pretty rough. Very beautiful, but nobody’s swimming there.)

Saturday, May 20th

Yesterday was fabulous. Really. We were all up early, three hours ahead because of the time change. The kids partook in much-coveted morning TV time, never ever a part of life at home, and I got our piles of things together for the day: towels, snorkel gear, sunscreen, swimsuits, changes of clothing, sandals, and reef shoes. Best thing we brought, this last item. Our Kneeland friends Steve and Melinda, who spent time on the Big Island when their kids were small, told us to make sure to the have them. The Kona side of the island is volcanic rock, and the reef shoes meant that we could walk in and out of the ocean without slipping around, and they protected our feet from sharp rocks.

We set out to get breakfast on our way to a beach that the woman at the hotel desk had recommended for children. We suffered about half an hour of frustration in the car while we failed to find the place she suggested for breakfast, kids fighting and crabby in the car. In the end we backtracked to a place Tomas and Gary had noticed the afternoon we arrived, and it was FANTASTIC. Set out over the lava rocks on the shoreline, Tristan could watch crabs down below and I looked up all the colorful birds on the shore on my phone. (Mostly introduced. Saffron Finch, Yellow-Beaked Cardinal, Common Myna…) Gary took crazy Tristan down to the rocky shore, where he successfully found dead crab parts, while I sipped his guava mimosa and my passion fruit mimosa and my Kona coffee at the table, allegedly waiting for our order. The food was terrific — Tristan was happy with his toasted bagel and bacon, Phoebe liked her pancake with whipped cream, all three kids were happy with their hot chocolates, and Tomas, Gary and I had wonderful big plates of pork and eggs and sausage and potatoes.

In good moods after breakfast, we headed for Kahalu’u Beach Park, not far away. It was hot and crowded, and it took us a few minutes to figure things out because the hotel woman had told us not to leave anything in the car and have one of us always watching our stuff on the beach. It quickly became obvious that this would be F’ING IMPOSSIBLE. We have three kids, two of whom can’t swim, and we had a ton of shit, and it was hot as blazes. So Gary “hid” our wallets in the car (who would ever guess that they might be in that ultra secret spot UNDER THE SEAT?!), I moved our shit to about four inches from the edge of the water, and we decided not to worry about it. And then we had a few WONDERFUL hours on the beach. It was black sand, with shallow tide pools created by lava rocks up close to the shore, and clear deeper water out farther. Tomas swam with snorkel and mask, with and without the boogie board. Phoebe first swam just with her mask, then figured out the snorkel as well. She was delighted! (Now there was no need at all to learn to take breaths!) Tristan, too, used his mask. There were colorful fish even in the shallow tide pools, so all three kids got to see them and LOVED it. Gary, Tomas, and I each got turns out deeper. I was hoping to see a family of sea turtles that a guy on the beach had just spotted, but I didn’t run into them.

The snorkeling definitely wasn’t Sulawesi. Much lower diversity, much less colorful. The water is cool. Not cold, but not warm like Sulawesi. Gary thinks it’s just not quite tropical enough to be so rich and colorful. But no complaints. It was perfect beach time with the kids and so much fun to watch them in the water.

We did a pretty good job with the sunscreen. Tristan’s cheeks turned pink, but he didn’t burn. Tomas is as perfect and gorgeous as ever, a bit darker. Phoebe, wonderful Sicilian-skinned Phoebe, despite gallons of sunscreen, turned a beautiful golden brown. Man, she is one lucky kid. I would have killed for skin like that. Mommy missed a few spots on her own back, but she’s more or less ok for it. Daddy’s face got tan.

We stopped at a market on the way home to look at tourist junk (now we all have necklaces) and to eat the famous Hawaiian shaved ice. Delicious. Phoebe chose the most toxic (and yummiest) fake flavor — blue raspberry. Her tongue and lips were blue for the next few hours.

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We got back to the hotel and put down our beach gear. Gary headed out to buy lunch back at the market across the way (tacos for Tomas, Gary, and me, rice for Phoebe, and a cheeseburger for Tristan — he eats those now!) while I took the kids down to the pool. We played for at least an hour in the pool. Phoebe is looking really good — she’s almost there with the swimming. Tristan is utterly fearless. He did cannonballs into the deep end, holding his breath to sink down and then bob back up while I stood by to retrieve him on the up-bob. He’s not at all bothered by the fact that he CAN’T FUCKING SWIM.

We all regrouped upstairs to shower and eat the food Gary brought back. There was no white rice, and Phoebe WILLINGLY ate Spanish rice. Hallelujah!

We ate dinner out at the place where we had lunch on the first day. Tristan and Phoebe each demolished their personal pepperoni pizzas, and Tomas tucked into a man-sized plate of ribeye steak (the most expensive item on the menu. Thank you, Make A Wish). Gary and I had fabulous salads.

Back to the hotel, pajamas, Netflix for Phoebe and Tristan, and the rest of us watched a GREAT Marvel movie Tomas picked out from the rental machine in the lobby.

It’s morning now. Tristan is still asleep — he’s got a cold. Tomas is happily ensconced in TV. Phoebe is rooting around in the fridge. Gary is lying in bed gearing himself up for the day.

For today, Make A Wish has arranged a private, full-day volcano tour. It involves not only volcanoes, but also a tour to a coffee farm, green sea turtles, lava tubes, a national park, driving up to 4000 feet, watching the lava glow after sunset, and meals at good local places. I was relieved when I talked to the tour folks on the phone yesterday. After reading in our itinerary that it was a full day thing, I imagined a bus full of tourists trying to block out the moans and complaints of my whining, tired kids. But then the woman on the phone said, “Oh, you’re my Make A Wish family!” She explained that this was a private tour for us, and that we can head home at any point or change plans at any point. Stress therein alleviated.

Sunday, May 21st

Yesterday was a BIG day. It took energy and commitment, and it was great.

We were picked up at 10am in a nice, big van that can seat 14 (plenty of room for Tristan and Phoebe to decide four times to move their booster seats around) by a tour guide named Dominik. Dominik is about 38. Bavarian, he moved to Hawaii to go to high school because he wanted to surf. He went back to Germany for college, then straight back to Hawaii. I’m telling you all about Dominik because, well, he was TERRIFIC, and he really made the day. More about him as we go along.

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Nominally, Dominik was to take us on a volcano tour, but really the day was an incredible, interesting, all-encompassing lesson on Hawaiian culture, history, geology, and ecology. Dominik was knowledgeable, articulate, and passionate, and Gary and I asked him what probably amounted to hundreds of questions. I learned all of NOTHING about Hawaii in school, and I have read ZERO about Hawaii in books, so I was craving exactly this kind of thing.

We left the hotel and then spent a few minutes driving around Kailua-Kona, where we saw the site of King Kamahameha I’s home. He’s the guy who first conquered all of the other islands and established the kingdom of Hawaii. We also saw the first Christian church, built from lava rock. Hawaiians embraced Christianity when it arrived because the royalty had recently abolished the traditional system that detailed the rules about both religion and law. (The queen at the time did away with it because it said women and men could not eat together, and she wanted to sit down at a table for an F’ING MEAL with her son. Goddamit.) The royalty neglected to put a new system in place, anarchy ruled, and everyone was relieved when the missionaries arrived with a solution. Go figure.

Then Dominik drove us southward along the western coast of the island. Our first stop was at the Greenwell Coffee Farm, which grows and roasts its own 100% Kona coffee. It sells for nothing less than 20 dollars a pound, some of it for $100/lb. We tasted coffee while Phoebe and Tristan “tasted” the farm’s honey (quotes because I think Phoebe probably ate a pound of it). The kids loved the tree inhabited by a harem of three-horned Jackson’s chameleons (introduced, of course, from East Africa). Tristan, in particular, was very excited by them. He used my phone to photograph them.

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We continued south along the coast, stopping to look over lava flows while Dominik explained the different kinds of lava, some smooth, some rough (influenced by rate of cooling), some brown, some black (determined by how rusted the iron in it is). The rough kind is called a’a, and vulcanologists around the world know what a’a is. It’s A THING. Dominik also began to explain the succession of vegetation onto the lava flows, which was absolutely fascinating and became a theme that unraveled and built and spiraled throughout the day.

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We also stopped to look over Captain Cook Bay, where Dominik told us about that unlucky fellow. First lucky, then not so lucky. The British explorer chanced into arriving on Hawaii exactly during the part of the year when the Hawaiians were worshiping and hoping for the arrival of a white-faced god. What with the white face, and the metals the locals had never ever seen before, and the canons, it was all smooth sailing for Captain Cook. At first. When old Cookie was ready to leave, he sailed off, right into a storm that broke his main mast. The ship returned to Hawaii to fix the mast, but it was bad timing for that sorry lot. The season had changed, and everyone was focused on a different god, and what with the floppy mast and all…not exactly a totem of masculine power, was it? The aloha was lukewarm, and the Hawaiians decided to swipe one of Cook’s dinghies, which had cool metal nails in it that would probably be good for making other things. Cook was pissed, and tried to kidnap one of the local chiefs to hold him for ransom in return for the boat. The plan failed. There was a fight, a bunch of people died, and the locals cooked Cook. They fed his entrails to their kids and distributed his powerful, clean bones (at this point they were sure he wasn’t their god, but, indeed, he was still powerful) to villages all around.

We stopped at an overlook from which we could see the steam at the southernmost tip of the island, where lava is flowing into the sea. We continued on to Ka Lee, the south point, and ate lunch in the southernmost bakery in the United States. The bakery happens to have a tiny botanical garden behind it, which Dominik showed us. Gary loved it, of course, and the kids ran around marveling at the mongooses (introduced from India) slinking around the plants and the orange-spotted (Malagasi) geckos on the walls of the buildings.

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We rounded the south point of the island and headed north east. We stopped at Punalu’u Black Sand Beach, where we were overjoyed to see a sleepy green sea turtle lying in the dark sand, in absolutely no hurry to go anywhere. The sand was amazing — big, smooth, jet black grains. We played for a while on the sand, then headed back to the van. The turtle was Tristan’s favorite part of the day, he says.

Around 3pm we entered Volcanoes National Park, where Dominik told us more about the lava flows and how vegetation grows back on them. (I’m getting to that!) We stood next to steaming vents — Tristan loved that, and I told him the hot, wet air was good for his lungs — and Dominik showed us Peleh’s hair. Peleh is the fire goddess, and the volcano spits out long glass fibers that look like hair — Peleh’s hair. You can find the fibers on the ground. The kids loved that. We drove to the summit of the volcano and looked from the edge of the biggest crater (a couple of miles wide — technically a caldera) over three nested craters, the smallest a few hundred feet across. It was spewing hot fumes. We walked through a lava tube that was a few hundred feet long. Lava tubes form as the surface lava cools. The inner lava remains hot, and sometimes doesn’t cool until it has flowed out of a hardened shell that then becomes a hollow tube. Apparently the island is full of these, and in ancient times Hawaiians used them for hiding, and to collect water, and to bury commoners’ bones. (The bones of royalty were put into the crevices of cliffs by volunteers lowered down on a rope. To preserve the secrecy of the burial site, the highly-committed volunteer then sliced through the rope to fall to his death. Seems like a good system! Fail-proof!) The lava tube was Phoebe’s favorite part of the day.

After the lava tube was a short walk in the rain forest. Beautiful, with the biggest ferns I’ve ever seen. They grow only a foot every ten years; these giants were 200 years old.

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We ate dinner in the canteen of an Army base located in the park. The clientele was, you guessed it, Army families and tourists. Can’t imagine that the chaos caused by the tourists (I’m thinking of what the table looked like after Tristan ate) is easy for the Army families. Fortunately is was Mongolian BBQ night, so we didn’t have to eat shit on a shingle. Tomas LOVED assembling a giant plate of meat, Phoebe ate a big bowl of rice (thatta girl), and Tristan ate chicken and noodles. Gary and I had a beer from the canteen with our bowls of food. Dominik worked hard to refrain from commenting on Tristan’s appalling behavior and eating habits. The kids loved the self serve ice cream.

After dinner it was dusk, perfect timing to go back to the crater. It was so BEAUTIFUL! In the dark, it glowed the color of an orange creamsicle, lighting the sides of the crater and the fumes rising from it. Tomas’ favorite part of the day. It was cold now, 49 degrees at 4000 feet.

We piled into the car for the long drive home (2.5 hours). Revealing a brilliant strategy to make that drive bearable, Dominik handed an iPad to each kid. We spent most of the drive home talking about a non-profit that Dominik has been working with to restore a small area of dry forest on the eastern side of the island. Feral goats and donkeys (introduced, of course) make regeneration impossible, and the project spent 80,000 building a fence around its property of a few hundred acres. The task required a helicopter to bring the fence pieces in.

Tomas and Tristan fell asleep in the van around 9. Phoebe showed her endurance and commitment to devicing, sticking to her iPad the whole way home. We arrived back at the hotel at 10pm, gave Dominik a big fat tip, which he tried to decline, and got his email address. Very much hoping he’ll visit us in Humboldt County. There was so much about him that’s much like the folks we know who are passionate about the redwoods and the ecology of the Pacific Northwest.

So, throughout the day, Dominik wove together this incredible story about how forest grows back on the lava flows. It ain’t fast. On some flows 200 years old, the few plants are just a few inches tall. And there is NO SOIL at the point. The plants are growing on bare rock, sinking their roots into small cracks. It is many hundreds of years before soils form. There is one single most important plant in the succession of vegetation on the lava flows. It’s called ohia lehua — Metrosideros polymorpha, related to the red-flowered bottlebrush ornamental we see on the streets of Berkeley. Polymorpha, many forms. Many forms because sometimes it’s mature and flowering at only a few inches tall, on a wind-battered hillside where there is zero soil and few nutrients to feed it, and other times it’s a huge, tall rainforest tree growing on the thick, rich soil laid down on the lava over hundreds of years as its smaller forms die and rot. You can look out across successive lava flows and see dark black ones that haven’t yet rusted, and where there might only be a few tiny ohia trees. And you can look at an adjacent lava flow that is brown with rust and that has more, bigger ohia trees on it. And then you can go into mature rainforest , where you don’t even realize that you are standing on lava, and here the ohia trees are huge and there is a giant fern, too, and the soil is thick — here there hasn’t been a lava flow for a couple of thousand years.

When the lava flows over mature forest, it forms vertical tubes around living trees, which then end up as hollow upright lava tubes.

A cousin of the blueberry is another of the early successors. Edible, but we could not try it because we were in a park.

Hawaiian honeycreepers eat the nectar of the ohia trees, and the trees create habitat for birds, and the birds bring more seeds that SLOWLY repopulate the barren flows.

It turns out that a professor at Stanford — Peter Vitousek — spent decades studying the ecology of the ohia trees, and that his work was a MAJOR influence on the way Gary structured his whole PhD. So how AMAZING and COOL that we got to spend the whole day seeing this system. It was very cool.

Monday, May 22nd

Yesterday was thankfully not such a crazy long day as the one before, but it was full, and we didn’t seem to have enough time for the things we were doing — which were all SUPER FUN!

We got started late (because I was composing yesterday’s entry about the volcano tour). Gary had wisely stocked us with breakfast food from the little ABC store near the restaurants we’ve been frequenting. He cooked breakfast while I wrote to you. The kids were, again, happily glued to the TV in one of the bedrooms. (I noticed that Tomas was up at 5:30 just so he could make sure to enjoy this luxury item to the full extent. Again this morning.)

After I finished my summary of the tour, we packed up for the beach. Many people have recommended to us Hapuna Beach, which is just a few miles north of where we were scheduled to meet a dolphin at 2:45. Per instructions from Make A Wish, I had tried repeatedly to reach Dolphin Quest to reconfirm our booking, to no avail, so I was a bit nervous about not totally knowing where we were to go and what was going to be involved. I was glad we were making the drive to the area a few hours before when we needed to be there.

Both the beach and the dolphin place are a few miles north of the airport, so we needed to head north along the western coast of the island. We ended up accidentally on an inland road, rather than on the coastal road. (We’re good at this kind of thing! Remember when, last summer, we drove our rental RV southward around Canyonlands National Park almost to the border of Arizona when we meant to be driving north to Arches National Park? Because we CAN’T FUCKING NAVIGATE — hey, it was a massive storm and we couldn’t see the sun! — we got to see the Colorado River Gorge, which was one of the most beautiful sights I’ve ever laid eyes on.) So, we drove a few miles extra and took an inland route up in the mountains, from where we could see the long, gently sloping hills down to the sea, and the coastline with its beautiful bays. We also saw boatloads of goats, happily chewing on Hawaii’s native vegetation, and a handful of mongooses darting across the road in search of the next endangered native bird to nibble on.

The kids were monsters on the car ride, which took about an hour, so Daddy and I were not exactly in Happy Parenting Land when we arrived. But we did find Hapuna Beach, and, true to what we had been told, all shoreline on Hawaii has public access, and the the security guards at the fancy resort behind the beach handed us a parking pass and gave us directions to public parking.

Still rattled by the drive with the kids, Gary and I grumpily loaded ourselves down with 450 pounds of snorkeling gear, boogie boards, towels, sunscreen, and waters, and we headed along a short path to the beach…which was AMAZING AND BEAUTIFUL! Maybe a quarter mile of white sand, the beach curves around a bay of clear blue water. We found a shady spot up against some big rocks to dump our stuff in and headed for the water. Tristan and Phoebe were hesitant at first, but it didn’t take long before all five of us were in the water. It was fairly gentle with some small waves. Phoebe spent a few minutes kneeling in the shallow water as the waves rolled in and out…and then she was IN!! She TOTALLY figured it out, learning how the waves would bob her up and down, getting that you just duck under the ones that are about to break on you, and taking a few strokes here and there when the water was smooth between waves. She giggled and giggled, just exploding with joy. After about ten minutes she said, “I LOVE the waves!!” She was in heaven. Tristan, too, had a big grin on his face. He sat and played in the shallow water, as Phoebe had, and then he was in my arms in the deeper water, then in Gary’s. He loved it, too. Tomas was a gorgeous, muscular Indonesian dolphin, as always. He loves the water and it’s second nature to him. My little fisherman from Flores.

Sadly, we didn’t have much time at Hapuna. Nobody was happy with Mom when she said we really should go so that we’d have time to eat and find the dolphin place…but then Tristan started to complain that he was hungry, and Phoebe needed to poop, and my case was made. We hiked back up the car with the 450 pounds of shit plus and extra five pounds of sand and headed toward Waikaloa Village. Ugh. This turned out to be a HUMONGOUS resort village of an extremely upscale sort. It had its own Tiffany’s inside of it’s own fancy mall. That way you can go enjoy Hawaii without ever having to leave the safety and comfort of your resort, and you can EVEN spontaneously decide to propose marriage to someone and buy your wedding rings RIGHT THERE! We had a quick lunch of fried stuff next to a fake lake, and then headed for Dolphin Quest.

Dolphin Quest ended up being inside of a huge, very fancy Hilton complex. We had our car valet-parked and followed the attendant’s directions through the complex to a lagoon where we could see…dolphins!

We found where we needed to be and checked in at a desk. There we had a brief moment of disappointment when we learned that only Tristan and I were booked (and paid for by Make A Wish) to have a “dolphin encounter”. (This was why I had been calling the damned place to try to find out what was going to happen!) This was quickly resolved by slapping down a credit card to add Phoebe to the group. (Thank you, Make A Wish, for the expense budget.) Tomas declined — he’s such a funny kid! But he truly did not want to do it. He doesn’t like being in the limelight, and he likes to see things before he does them. Anyway, he volunteered to take photos with Gary.

After we checked in, young, tan women in swimsuits (all purportedly holding degrees in marine biology) outfitted Phoebe, Tristan, and me with lifejackets and snorkeling mask. Phoebe chatted with one of them and learned the names of all 12 dolphins in the lagoon, their relationships with one another, and various other essential details. Phoebe made herself explicitly clear that she very much wanted to meet one of the the baby dolphins. There was a bit of a too-long wait, and then it was time for the three of us to get into the lagoon!

Our tan, swimsuited dolphin trainer called over Ipo, who is five years old, weighs 300 pounds, and still nursing on his mamma. Lucky boy. She slapped the water and he glided up, rolling over on his back in front of us so that we could pet his belly. I’ve never felt anything like it. His skin was smooth and cool and pink and grey. Three things happened right away. First, I started to cry — I couldn’t help myself! This was so amazing and I felt that I LOVED this dolphin with all my heart! — and, second, Tristan asked where the dolphin’s poop hole was. Tristan’s question brought me back to Earth a bit, and while the trainer was showing Tristan the dolphin’s asshole, that got me thinking, where’s his weanie? So, third, I asked her, does he have a baculum? A what? she said. Marine biology major, my ass! How could she not know what a baculum is? Every marine biology major has surely had the opportunity to admire a whale baculum! A penis bone! So then I had to explain to the girl what a baculum is. At this point both she and the photographer were giggling (and thought both me and my kids were TOTAL FREAKS). Fortunately we then moved on from asshole/penis bone conversation to the normal stuff people talk about when they meet a dolphin. We continued to gently pet sweet Ipo, and Phoebe got to kiss him (her first kiss with a boy!), and Tristan was excited and happy. The trainer then sent Ipo away and called over his mamma Iwa (“Eva”). She was lovely and sweet and we admired her and watched as she demonstrated her speed, zooming across the lagoon and back straight toward us at almost 20mph. And then we met Nimbus, a large male who was brought from Bermuda to be the breeding male for the program. I loved these dolphins’ faces, to see them hold their heads out of the water to look at us. What wonderful animals.

The trainer obliged Phoebe’s (clearly stated, many times) request to see the babies, and walked us on a narrow walkway to a part of the lagoon where they were swimming. I think this may have been planned for us because of the Make A Wish connection, but I’m not sure. Phoebe was so happy, and the beautiful babies swam over to us and raised their heads out of the water to look at us.

We said goodbye the the dolphins, did the requisite stop in at the gift shop (where a swimsuited “marine biologist” kindly printed several photos for us, courtesy of Make A Wish), retrieved our car via valet, and drove back to Kona.

We stopped for dinner, where Gary and Tomas feasted on abalone and oysters, and where Tristan ate an oyster. He wasn’t too sure about it. After dinner we went into the ABC grocery store, where the kids and I went nuts on crappy souvenir items — a Hawaii keepsake baseball for Leah, a small box of shells for Coral, and plastic dolphin key ring for Sydney, a tiki for Bastard (Tristan’s friend Baxter, whose name will forever be Bastard in our family, thanks to Tristan’s awesome mispronunciation of his name). etc. That was loads of fun, and we found the perfect crummy item for each of our loved ones.

Back to the hotel for showers and a new Star Trek movie. I don’t get it — why is there a Spock and an Ahura and a Czekov? And they’re young. Is this supposed to be the original crew, when they were younger? If someone could please enlighten me, I’d much appreciate it.

Now Gary is cooking breakfast and we are gearing up for our last full day here. We have decided to go back to Hapuna beach this morning, and to then have some pool time, which the kids have been loving, in the afternoon. Tonight we will attempt to go to a luau!

Tuesday, May 23rd

Our final full day. Man, that went way too fast.

We spent the day doing exactly what one should do on a last day in Hawaii: we went to the beach again for the day, and we went to a luau in the evening.

We drove back to Hapuna Beach, this time along the crowded coastal highway, and returned to our spot up against the rocks. And then we had an absolutely delightful few hours, mostly bobbing in the waves. Phoebe was more or less a mermaid at this point. I’m not saying that she’s taking long strokes and putting her head up to breathe, but she’s totally comfortable in the waves, even with getting bashed over by them now and then. Tristan was happy to be in someone’s arms, or, for a while, on my back. While he was on my back, we met a green sea turtle swimming by! I swam along behind it for a while with Tristan attached, and eventually the turtle put its head up to have a look at us. What a lovely, noble creature.

I did some boogie boarding, and, at one point, I caught the RIDE OF MY LIFE. The wave was GINORMOUS, at least 2.5 feet tall. My timing was PERFECT. The wave lifted me up, and from its TOWERING crest I felt like I was at the edge of the world! It carried me on and on, for all of about 30 feet — my balance was perfect, and I stayed right on my belly on that board — and then flung me and board onto the sand, across which we skidded for another 20 feet. Sand splattered up into my face. The wind whipped my hair. It was a beautiful moment. I was a BOOGIE BOARDING GODDESS. I contemplated staying on Hawaii and becoming a pro boogie boarder. A tourist standing by gave me props; “That was great timing,” he said. I did my best to flex my toned biceps as I gripped the board and jogged back into the water to catch another AWESOME RIDE. (When I read this paragraph to Tomas, he asked me if I was kidding. If any of you are also wondering, like my humorless son, YES, I’m fucking kidding.)

Gary and the kids built a huge sand castle. I rotated around, slathering the children with sunscreen again and again. Tristan stayed lily white, Phoebe continued to turn golden brown like a perfect campfire marshmallow, and Tomas’ melanocytes were busy turning him into an obsidian god. I don’t understand sunscreen. Mystery.

At 2pm we headed back to the hotel. We hit rush hour, which happens between 2 and 3 on Hawaii, as well it should be. People NEED time to surf in the afternoon! The drive back to the hotel was long, but Tristan had an excellent nap. At the hotel, we showered, dressed for the luau, and fed the kids some healthy, nutritious ramen.

We drove a short distance to a resort where the luau was to be held. It began at 5pm with an open bar and lessons, if you wanted them, in using the poy ball, which is a ball on a rope that the Maori of New Zealand use as a game and in dances. They spin the ball on the rope, sometimes doing a different thing with each ball and working with four or five at a time. There was also “traditional” “tribal” “tattooing”, which consisted of a beautifully tattooed Hawaiian dude sitting at a table with a basket of Sharpies. He assured me that I would not get Sharpie poisoning, and that he himself had received many Sharpie tats while he was in high school, before he got his real ones. Partially reassured, I received a tattoo of a tribal turtle. It took about 23 seconds from start to finish. Tristan got a tattoo of an eel. Phoebe declined.

We watched a boar being removed from the earthen oven. This boar must be the dinner for tomorrow’s luau, because dinner was served immediately after the pig came out of the ground. Can’t imagine he ended up on the buffet table that fast. We had priority seating up at the front, which also granted us early access to the buffet table. Thank goodness, because my kids are not so good at the waiting thing. Tristan ate a big plate of pork and rice. Phoebe ate rice and rice, sprinkled with salt and with a roll on the side. (Christ, she’s like an epiphytic plant with dangling aerial roots — she must be getting her nutrients from the fucking air!) Tomas ate a ton. Gary and I ate, but not exactly with gusto. The pork was yummy, but, well, Hawaiian food (if this was it) is made with a lot of soy sauce and teryaki sauce and sugar and it’s simply not terrific stuff.

After dinner the performances began. They included not only local dances, but also Tahitian and Maori (with poy balls) ones. The costumes were beautiful and the dancers skilled. We all loved the final performance — the Polynesian dance with fire sticks. Predictably, Tristan has announced that he KNOWS how to do this and will soon try. Grandmas, please put those matches away. I think we’re going to have our fireplace removed and switch over entirely to propane. We MUST remove all sources of fire.

We did most of our packing last night after we got back to the hotel. Phoebe is still snoring like a freight train, Tomas is desperately getting in his early morning TV time on this last morning of open TV access, Tristan is waking up, and Gary and I will soon launch into final packing mode.

This really was loads of fun, and I think that all three kids had an absolutely fabulous time. Gary and I did as well, though this was a funny kind of travel for us. To be immersed in Tourist Land, to never sit down with a native Hawaiian for a conversation, to never real hear people on the street or in a cafe speaking Hawaiian…it’s odd and it left me craving for a look at what is really Hawaiian. But maybe there isn’t really much more, at least on this island. Native Hawaiians are a minority here, and, according to a book on Hawaiian language that Gary picked up at the ABC, the Hawaiian language is almost dead. A few years ago the number of schools teaching in Hawaiian declined to ZERO, and the average age of people who speak it has gone up and up. Fortunately, very recently there has been a renewed interest, and a few schools now have immersion programs in the language. We’ll see. If we come back here, I’d work hard to find a way to spend time somewhere where we could maybe NOT be in Tourist Land. Maybe we could find Phoebe an internship with pig farmers…no! sea turtle restoration!, Tristan one with fire dancers, and Tomas one with fisherman? Gary and I could pick coffee beans…

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Catching up

Tuesday, May 23rd

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Sorry for the long silence, friends. It has been an EXTREMELY busy few months. Gary traveled several times, the kids were involved in lots of sports, and I was up to my eyeballs in a Human Physiology class at a local junior college.

Some highlights:

Tomas is playing on the local Little League, and on a competitive traveling baseball team, and on a competitive traveling soccer team. Yes, it’s nuts, but he’s happy, and he’s not too tired, and he’s doing well in school, and we live on a mountain with only about 300 other people and the sports arena is where Tomas is meeting people and developing a social life. The latter baseball team, the Renegades, is doing rock star well, and has won its last two tournaments. In Little League, Tomas recently had a tough game; the tides turned as he was pitching, and a winning game turned into a losing one. He went to bed afterward feeling very sad and blaming himself, despite our efforts to reassure him that games are lost by teams, not individuals. But, in the following game, his confidence (which is sweet and modest) was restored when he was last at bat and hit a home run, then pitched and stuck his glove out to casually catch a line drive that might have allowed the other team to tie up the game or even to win it.
IMG_0714The karate schedule, too, is nuts, but we love it. Over the last few months, Phoebe earned her Advanced Orange belt, and Tristan got his Beginning Yellow belt. Phoebe’s focus is improving (she spends less time posing in the mirror), and she’s starting to look like a natural when she somersaults forward and chops the air, her blonde braids flying. Tristan likes to hit the instructors as hard as he can. Where else is he allowed to pummel grownups and get high fives for it? Mommy earned her Purple Belt in the adult class and was surprised to discover that she likes sparring. (The last and only time I came even close to a physical confrontation was in third grade, when Jozanne told me she’d beat me up after school. At 2:40 I raced to my red Schwinn, dialed in the number code on the lock as fast as my little fingers could swivel, and raced home to safety.) Liking sparring seems to run in the family; at her last test, Phoebe was overjoyed to fight  a second time when the master needed an opponent for the final kid, and, at his test, Tristan got to spar the grizzly bear-sized master himself. Tristan is confident that he won that match.

Tristan and I made several trips to UCSF for his treatments. All went smoothly, though one was a race wedged between my Monday and Wednesday classes and another required driving a crazy, long inland route when a huge rock slide closed Highway 101. The most recent trip south took place after my class finished, and Tristan and I enjoyed two nights at Chris and Agi’s. We have discovered the Aquarium on the Bay and have fallen in love with the baby stingrays that one can pet in a touch pool. They poke their funny little pug heads out of the water to get a better look at you.

I absolutely loved the physiology class I took. It felt good to put a different part of my brain to work again (I wasn’t sure it still worked!), and I was truly blown away by the things I learned. Why did I previously avoid molecular biology classes when I was given a choice?! You would not believe the incredible things that happen in our cells. There are little pumps and channels and transporters that all have their jobs, and that spring into action when the right hormone or other chemical or wave of electricity comes along and tells them to get off their asses! It’s amazing! I was inspired to Amazon order the 1968 movie The Fantastic Voyage, which I last saw forty years ago on our cumbersome RCA video disk player with its huge lever to eject the disks; the movie arrived in the mail and Gary, the kids, and I snuggled up on the couch to watch miniaturized scientists travel through a man’s body to repair a brain injury, get attacked by white blood cells, and suffer a massive earthquake in the inner ear when a life-sized human outside dropped a scalpel. All the while I narrated the movie with my newfound physiology knowledge. I’m sure it was only mildly annoying to the rest of the family.

From the class I learned as much about teaching as I did about physiology. The professor was fabulous, and she employs a technique called flipping: the students watch her lectures on YouTube BEFORE class, and then the whole “lecture” time is a discussion of the material, with study questions presented the computerized chalkboard and plenty of time to sort out all confusion. Students “click” using a app on their phones to answer each question, and immediately afterward the stats on how the class answered each question are presented, giving the professor instant feedback on how well-presented and readily-understood was her material on the topic. The teaching method totally flipped the memorization-to-understanding ratio for me; had I taken this class as an undergrad in a typical lecture hall, I would have spent lots of time and energy memorizing factoids soon to be forgotten. I barely did any memorizing for this super class. Loved it. Next semester I’ll take Microbiology…

And with that brief update on the last few months, now onto some really fun stuff. I’m sitting on an airplane right now, and we’re all on our way home from Tristan’s Make A Wish trip to Hawaii!

The next post is a summary of our trip, with lots of pictures to boot.

When it rains…

Monday, February 13th
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..it pours. Especially in Humboldt County. It rained all of last week. I never arrived anywhere dry. I scraped the mold off of my skin with a shaver in the shower, and scrubbed it off of the kids in the tub with a washcloth. Ok, not really, but that doesn’t seem far from reality. It’s wet here.

If the literal pouring down of rain going on last week wasn’t enough, there was also quite a lot of figurative heavy precipitation happening. Gary left early Sunday morning for a week in D.C. Meetings with clients. On Sunday evening, the wind began to howl, rocking the house and heralding another storm. It tore the old wooden gate off of its post at the bottom of our driveway, tossing it across the dirt road. Too heavy for me to lift out of the way, the gate remained blocking the driveway for the whole week. Leaving our place necessitated driving across our “lawn”, a misnomer because it’s local grass freckled heavily with pocket gopher mounds and canine digging projects in various states of progress. Lawn or not, it was a bummer to see how the tires churned up the grass and turned it into mud around the house.

On Monday evening, while the rain continued, Tristan developed a low fever. Not high enough for me to call UCSF, but nonetheless anxiety-provoking. By Tuesday morning, which was rainy, he had a terrible, raspy cough, but no fever. Tuesday night, as the rain pounded the windows, I lay awake listening to his horrible hacking, feeling that something worse was coming, and stressing out about my midterm the next morning. By some act of sheer insanity, which I have been describing as an experiment to see if my brain still works after having three children, this semester I enrolled in a Human Physiology class at our local junior college. The first test was the following morning.

Tristan remained fever-free Tuesday night, but his cough was so terrible that, instead of taking him to pre-school Wednesday morning, which was — you guessed it — grey and rainy, my mom watched him. I made it to my test (the results of which may or may not indicate that my brain has, in fact, ceased to function). As soon as I arrived at my mom’s after the class, Tristan began to spike a fever. Thereafter ensued eight hours in the ER Wednesday afternoon into the night, a chest x-ray that was clean, fevers over 103, more blood counts on (grey, wet) Thursday, more fevers, a long visit to Acute Care on drizzly Friday, another chest x-ray that was not so good, and, finally, a diagnosis of pneumonia in two lobes of Tristan’s right lung.

Ah, I should not neglect to mention that early Thursday morning the winds blew a power pole across Kneeland Road, below our house, of course, and we lost access to town for the morning and to our electricity for the whole day. Fortunately Tristan’s fevers that morning were not scary high, and it wasn’t necessary to plunge through the arboreal debris, leaping live wires, to cross the blockage and get down the hill to the hospital. (I should mention that our neighbors did engage in such a brave endeavor, with the help of the PG&E crew, in a valiant effort to get their son to the regional spelling bee. Kneelanders are a tough bunch. And we are gud spellers. Tragically, Noah missed being able to join the competition by just a few minutes.) We went down later in the morning to have a CBC run, somehow lucking into hitting a window between when the tree and lines were cleared and the road was blocked again for PG&E to install a new pole.

By yesterday, Sunday, Tristan’s fevers had abated after three days of antibiotics. Throughout all of this, his blood counts stayed high. He is one tough little guy. If his counts had indicated that his neutrophils were low, and his immune system failing, we would have been in the hospital, maybe even choppered back to UCSF.

The peeps at UCSF were fantastic throughout all of this. I exchanged about 50 emails with our outpatient nurse, Ilana, and ten or so calls with the pediatric oncology hotline, and I frequently handed calls from Ilana over to the doctors and nurses attending us. The ER at St Joe’s was wonderful, too, slipping Tristan past the throngs of waiting patients and past more patients on gurneys in the ER hallways into a private room. The hospitals up here are so full that they’re transferring patients out of the county, but they took good care of Tristan.

Gary arrived home Friday afternoon, when the weather cleared. (The metaphorical clearing of weather for Gary is, you may remember, a well-established pattern. Recall Gary’s easy peasy visit to the clinic with us around Christmas 2015, when Tristan was in the gnarliest part of his treatment. See: Chemo is a piece of cake!). Gary felt bad that he had missed most of the fun. Yesterday (in lovely sunshine and mild temperatures) he busted his butt to re-hang the wooden gate and undo some of the tire ruts around the back of the house. Together the spring growth, gophers, and gopher-hunting mutts will surely restore the landscaping to its former Kneeland glory.

We’ve had two trips to the clinic, both of them smooth, since I last wrote. The first took place a couple of days after Christmas, while the bigger kids were still out of school. Tomas, Phoebe, and Oma joined Tristan and me for the trip down to the city, where we spent two nights at Family House and a third at Chris and Agi’s. The kids had a ball at the clinic. No, I’m not kidding. Tristan OWNED IT. It’s HIS clinic, and, after we were checked in, he swept Phoebe off into the little cubicle filled with toys. He showed her everything there. Tomas, a device addict, happily immersed himself in an iPad. Soon after we arrived, a small girl came to the toy space, trailed by her mother and an IV rig hanging a bag of blood. She quietly watched Tristan and Phoebe play for a while. Then, while the nurses got Tristan ready for his chemo, Phoebe and the little girl pulled two chairs together and, shoulder to shoulder, they played video games while the red blood dripped into the kid’s veins. (She has thalassemia, and, while she waits for a bone marrow transplant, she has a monthly transfusion.) Phoebe was entirely unperturbed by the transfusion in progress. It was as natural as anything. Tristan was in a good mood throughout, happy to have his siblings with him, and he didn’t seem to mind at all that the nurses blew the veins in both of his hands before they successfully started an IV in the bend of his elbow. (In their defense, Tristan was a bit dehydrated and it wasn’t really their bad.)

On this visit, we also met up with Susan, Noah, and Maisie to visit Cal Academy and had lunch together in the Sunset District. The Academy was a madhouse on the vacation day, but the kids were oblivious to the mayhem and loved the exhibits.

 

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Our clinic visit in January was done on a run, fit in on a Tuesday between my classes on Monday and Wednesday morning. We spent Monday night at Noah’s house in Mill Valley, and joined the family to celebrate Maisie’s ninth birthday. She has put on a welcome ten pounds since being diagnosed with diabetes at Thanksgiving and starting to receive insulin, making up for not having gained an ounce in the previous year. Noah is bald again after radiation treatment over Christmas, but he was in a good mood and looks strong. He and Tristan played while Maisie unwrapped her gifts and Susan and I drank wine.

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Of other news:

We were joined in Kneeland by Oma, Nagypapa, Nikki, Chris, and Agi for Christmas, which was complete with snow! We — never mind who, exactly — burned the cheese fondue, but nobody cared and we had a great time anyway. The kids were inundated with gifts, which was a bit overwhelming, though many of them were fabulous books that we’ve been enjoying. At the top of the list is a Tomi Ungerer collection from my mom. Man, that guy is brilliant. He sure wasn’t afraid to write about anything, and he’s funny, and his words are sophisticated and smart, and he knows that kids can’t resist just a tiny bit of gruesome, e.g., something that looks like a drop of blood on the edge of an ice cream carton. I have had 100% of their attention after my kids noticed things like that in Ungerer’s stories. All three of them LOVE his books, and we’ve been enjoying the collection. Equally fabulous was Chris and Agi’s gift to us — tickets to the Cirque de Soleil show in San Francisco the day after Tristan’s post-Christmas chemo. The show was stunning, and there was something in there for each of us. Tomas was blown away by the soccer ball acrobatics duo, Phoebe loved the beautiful oranges and greens of the Mexican-themed costumes, Tristan liked the popcorn, and I was enthralled (and horrified) by the positively serpentine man who could tie himself in knots.

Also around Christmastime, Tomas performed in another repertory theater production, this time as Shermy in Charlie Brown’s Christmas. He also played a big role in his school play, which had in it a hilarious scene in which time travel brings together into one room some Kneeland students, Shakespeare, Darwin, Einstein, and, last but not least, Pikachu, at whom Einstein fires off Poke balls. Tomas did a terrific job in both productions. I’m so proud. He’s a shy, quiet guy, and he takes these things on of his own accord and totally comes out of himself on stage.

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Tristan and Phoebe have continued their karate classes. Phoebe earned her orange belt in late December. During the test, she delivered a few impressive whacks and kicks in her techniques and sparring, which earned the bigger kids with higher belts a scolding. “That little blond girl in pig tails hits harder than all of you!” the master told the blue and purple belts. Tristan has wonderful focus in his lessons and has learned to do an impressive kiai when he kicks.

Last week Phoebe turned seven. She invited her whole class over on a Friday afternoon for a party, which was mermaid-themed, complete with blue and green streamers (ocean currents and seagrass) hanging from the ceiling, Hawaiian leis, seashells on the tables, seaweed snacks, and a totally un-mermaidy Mexican pinata. A contingent of hardy children took the fun outside, despite the drizzle and slop. When parents arrived around 5:30, Gary handed them a glass of wine and I returned to them their mud-splattered children, most of them missing a sock, or their homework papers, or a limb. Ok, none of them really lost limbs at the party, but the general level of chaos did make me consider, once again, having the parents sign a liability waiver before our birthday parties.

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On Martin Luther King Day, Tristan was interviewed by two volunteers from the Make A Wish Foundation. Ages ago our social worker at UCSF had urged me to “think big”, and so Gary and the kids and I have had many dinner table conversations about wishes of impressive dimensions, some of them (e.g., a tropical vacation) more attractive to the grown-ups among us than others (e.g., Legoland). Meanwhile, Tristan developed an obsession with opening his own museum, which will display octopus legs, he says. Somehow, by the time the Make A Wish folks came, all of this had congealed in Tristan’s brain as a trip to Hawaii to swim with dolphins, see volcanos, and collect octopus arms. The volunteers kindly overlooked my son’s freakish hopes of dismembering a cephalopod and focused instead on petting marine mammals. I privately reassured Tristan that we’ll scour the beach for octopus arms to stock his collection. Tristan’s wish is currently under consideration by the good folks at Make A Wish.

Election night was a bit of a bummer. Gary was in Finland, and Tomas stayed up with me while I checked the polls on my phone. When the result was clear, and I told Tomas, he got quiet. Then he asked me, Mom, is Trump going to send me away? What a terrible question to be asked by my baby. No way, Buddy, I told him, though I was shaken when, a couple of weeks ago, I received an email from Adopt International recommending that all families with foreign-adopted children apply asap for a Certificate of Citizenship from Homeland Security, as passports can expire and who knows anyway how long they’ll be the golden seal of citizenship. Ugh, so awful to suddenly be fearful about my kid’s security in this country. I’m over-reacting, right?

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