
..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.
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.
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.
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.
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?