Now, after scrabbling for something of interest to write about, things are, once again, escalating to the level of insanity to which we have grown accustomed over the last year and a half.

Most recently, three nights ago Tristan, Phoebe, and I missed a shootout in downtown Eureka by ten minutes, all because we wanted to show off the kids’ karate gear to Gary’s parents. When Tristan and I picked up Phoebe after her playdate at Noni’s house, the kids changed into their gis and showed their grandparents a few moves, which put us ten minutes behind our usual arrival time at their karate class — on most lesson nights, I help them put on their gis at the gym. As we approached the dojo and tried to park, we encountered a thick jungle of police cars and flashing red lights and yards of yellow tape sealing off the whole block. As we were redirected by police officers down a side street away from the dojo, I asked one if I couldn’t get my kids to their class down the block. “Class is cancelled tonight,” he responded with a scary gravity. It soon unraveled that there had been a shootout directly in front of the dojo, an armed man who ran from a traffic stop and then attempted to hijack a car. All of the students and instructors from the class before Tristan’s and Phoebe’s, as well as the early arrivals for my kids’ class, had belly crawled to the back of the gym and spent two hours huddled in the boys’ locker room to avoid stray bullets and then to wait for the police okay. A 13 year-old black belt named Precious emerged as a superstar when she crawled back across 50 feet of mats, toward the guns and mayhem beyond the dojo’s huge glass windows, to take a toddler from a mother who was struggling with two small children. She army crawled back to the locker room with the child to her chest. The Eureka police department will honor her courage with a plaque. I was glad we had opted to put on the kids’ uniforms across town. We were all very shaken.

Other recent excitement involved a visit from Noah and his family the weekend before Thanksgiving. Tristan and I met Noah and his mom Susan over a year ago in the Oncology Clinic at UCSF. Susan and I talked while our miserable boys got their chemo, and, in the conversation, I realized that Tristan and I had, some weeks before, met Susan’s firefighter sister in the Ocean Beach Safeway. She had told me about her nephew with leukemia. Then fate brought Susan and me and our boys together in the clinic. Since then, Susan and I have become good friends, and Tristan and I have stayed many times at their house in the Bay Area when we drive down for his treatments. A few days before Thanksgiving, the whole family, including Dad and Noah’s big sister Maisy, made the long drive to Humboldt County and spent a couple of days with us on our mountain. It was such a pleasure to have them. Noah and Tristan played beautifully, and Phoebe and Maisy were attached at the hip, fully committed to Legos all weekend. We ate a lot, drank wine, sat by the fireplace, took a hike on our property, and talked. So happy to have met those guys.

Although the visit was loads of fun, there were events that weekend that portended bad stuff. Susan said that they had had to stop ten times on the five hour drive up for Maisy to pee. She was worried. Later she told me that the drive home was the same, and that Maisy drank absurd amounts of water on the way. Susan got on the internet that night and diagnosed Maisy with diabetes. A trip to the doctor the next day confirmed it: Type I diabetes. Susan found herself again on the familiar sixth floor of UCSF’s Children’s Hospital in the Hematology-Oncology ward, in a room Noah had occupied for weeks after his leukemia relapse last Christmas. Noah was angry. “Maisy, that’s my bed,” he said. They spent Thanksgiving in the hospital and are now home again, while Susan masters balancing Maisy’s blood sugar levels and giving her ten shots of insulin a day. How on earth does this happen? Just plain unfair. Susan and Al are dazed, stunned.

On the upside, we had a follow up appointment a few days ago to see how Tristan’s hand has been healing. The PA we saw pronounced Tristan’s hand in good shape, no need for additional follow ups. He expects the flexibility of the healing finger to continue to increase, and he does not think the scarring will cause any restrictions on the its movement.

The PA was a big, friendly, pony-tailed, Humboldt County kind of guy. He asked Tristan about school, and if Tristan has friends at school. Tristan answered, “Technically, just one.” “What’s his name?” Lance asked. I gritted my teeth and prepared for Tristan’s response and the PA’s reaction. “Bastard,” my son said. “Um, what was that?” I watched the astonishment wash across the guy’s face as Tristan repeated his pronunciation of his best friend’s name. “Baxter,” I interjected. “It’s a pronunciation thing. A small problem with the letter X.” The guy almost busted a gut.

Throughout the fall, Tristan continued to go to preschool down in town two half-days a week, though somewhat spottily thanks to a case of chicken pox at the school and an epidemic of hand-foot-and-mouth disease that swept through northern Humboldt County. We have now developed a system with the teachers at the school for checking in about new kid diseases and measures of green snot at the school, so as to avoid the half hour drive to town on days when it isn’t safe to take Tristan. My son, however, is unconcerned about green snot and seems to love going, and his friends (of which there are “technically” more than one), are so sweet and so excited to see him each time.

For most of September, Tristan was unable to do karate classes while his finger healed. He sat in my lap and watched YouTube videos that could only appeal to a four year-old (e.g., of other kids dressed up in superhero costumes doing somersaults in their backyards) while I watched gentle, kind Phoebe learn now to plant roundhouse kicks squarely in the crotches of other sweet, adorable kids. Her instructor has bestowed upon her the nickname “Killer” in friendly jest. With her big blue eyes and her bouncing ponytails, she looks about as far from a killer as you can get.

After Tristan was cleared by the orthopedic surgeon to resume karate, he didn’t want to. For most of October, he sat on my lab during lessons. Eventually it dawned on me that YouTube was the problem. I told him no more YouTube during karate. Four and half milliseconds after I related this devastating news, he said to me, “Mom, I just membered [sic] how much I love tatti [sic]”. Next class, he was back on the mat in his gi. Now, in addition to continuing to join Phoebe’s class for the warmups and stretches, he attends the Little Dragons class for small kids. He keeps asking when he will test for his yellow belt, although he hasn’t yet learned a single technique. His long-suffering instructor is still trying to teach him left from right.

Of other news: Tomas and Phoebe finished up their soccer seasons; Tristan got a few weeks in on his first soccer season after his finger was sufficiently healed; Phoebe was a Spider Queen for Halloween; Phoebe is READING!!; I ran a sloooowwww, rainy, half marathon under the redwoods on the Avenue of the Giants; we’ve had our first snow; and Tomas, entirely of his own volition, has joined the cast for a production — Charlie Brown’s Christmas — at the Ferndale Repertory Theater. My shy big boy says his lines beautifully and is confident and comfortable on the stage. So proud of him, and wish I had done the same when I was his age and beat my stage fright back then.

Finally, Tristan and I have made three trips to UCSF since I last wrote. Each visit was smooth, and Tristan continued to do fabulously with getting his chemo via IV in the back of his hands. I watch him carry himself through the clinic visits with such composure and awareness, and I am so thankful to be rid of that damned port. Best thing his doctors ever did, to give him the option of having it removed and receiving his treatments through a peripheral IV. Strange as it may seem, our visits to the clinic are filled with funny, sweet conversations with our lovely social worker Jenee (who lost a leg to bone cancer when she was 15), with our outpatient nurse Ilana (who answers my emails at 10pm on a Saturday night), our favorite chemo nurse Andrea (who always fishes the best prizes out of the supply closet for Tristan), and our team of incredible doctors, who never seem too busy or rushed to answer all of my questions. It would have been better had cancer not happened to us, but our lives have been enriched by the fantastic people we’ve met over the last 15 months.

Tristan has a way with words. He’s unusually articulate. He can REALLY say what he wants to say. Express himself with JUST the right words to really capture his feelings of the moment, his inner animal. Unfortunately, he hasn’t yet learned the art of tempering his language to be appropriate for the particular audience present, or the setting he’s in. (I know some of you are pointing the finger at me. Acknowledged.) When he re-entered pre-school a couple of weeks ago, on our arrival the first morning, Tristan’s splinted arm got many ooohs and aaahs and lots of interest from kids and teachers. My son raised up the bound hand for all to see and announced, with passion, “It hurt like hell.” (“Hell” is a bad word these days, for those of you who raised kids when it was still ok.) Then, on a recent flight down to San Francisco, just after the kids and I had settled into our seats, all passengers were buckled up, and there was a lull in the commotion of the cabin, Tristan bellowed, “FIRE IN THE HOLE!!!”. By some miracle, the passengers around us simply chuckled and the stewardess didn’t hear (or pretended not to), so Tristan is not on his way to Guantanamo.

Despite his facility with language, the pronunciation of some letters does pose a challenge to the kid. When he started school again, he and an adorable boy with cherubic yellow curls quickly became best buddies. The boy’s name is Baxter, which Tristan very clearly and distinctly enunciates as “Bastard”. “Over here, Bastard!” he shouts across the school yard, summoning his friend to scratch for rolly pollies in the dirt. “Bastard! Bastard, I made you a sticker present!” Tristan says loudly as he hands over his daily gift to Baxter. In response, and out of concern that the mispronunciation will spread like the flu through the classroom, Tristan’s teachers have initiated regular school-wide exercises in saying words with “X”s. Good luck guys. I’ve tried, too. Tristan is adamant that it is “Bastard”. BAS-TARD, he tells me slowly and carefully, like I’m an idiot.

Tristan’s hand is healing well. After being released from the hospital, he took oral antibiotics for over a week. I anxiously felt his forehead for fever many times a day, but he thankfully came through with no infection. He proudly showed off his splint at our chemo visit to UCSF the week after the accident, and the wound awarded us a “Get Out of Steriods” card for September, as the steroids can slow healing.  An upside! We got to skip Tristan’s monthly five days of roid rage. Tristan wore the splint for three weeks, and then we graduated to “buddy taping” the injured finger to its neighbor. We quickly dispensed with the taping after I saw him hanging from a pole with his left hand. Appointments with the surgeon have shown the finger to be healing well, and another x-ray next week will tell more. The finger is no longer painful, and looks more or less normal at first glance. It won’t quite straighten yet and has a heckuva scar on the inside, opposite the middle finger, but, well, it works, thank goodness.

The finger smashing incident delayed Tristan’s return to pre-school by a couple of weeks, but, when he did go back, it was incredibly smooth, thanks in large part to the quick friendship with Bastard. In fact, Tristan is asking to go MORE days than just the two half-days for which he’s signed up. Hopefully he won’t be permanently suspended for profanity.

September had two big events for our family, the first one a happy surprise. A couple of weeks ago I got a phone call from our social worker at UCSF. “I hope you don’t have plans for Saturday,” she said. “You’re going to be in San Francisco!” UCSF had gotten us five tickets to the September 17th Giants game against the St Louis Cardinals, with an invitation to a pre-game meet and greet with Giants catcher Buster Posey and his wife Kristin, who are working to raise awareness about pediatric cancer. Tomas would be out of his mind with joy! Gary and I launched into high gear, arranging last minute travel, animal care for home, etc. Family House kindly agreed to let us stay there on Saturday night, as, although this wasn’t a trip for treatment, it was a UCSF-endorsed invitation for Tristan to represent pediatric cancer patients at the pre-game event. Gary ended up scheduling a Friday meeting in San Francisco, so we all went down on Friday to enjoy his hotel room, excessive cable TV-watching, and take-out Chinese food.

Late Saturday morning we moved over to Family House, where Gary, Tomas, and Phoebe had their first taste of the beautiful new building with its donated Pottery Barn decor. After eating leftover Chinese food for lunch, we clad the kids in orange t-shirts and Giants hats that Tomas had supplied for everyone from his well-stocked hat drawer at home.

With a quick stop to play in a park, we walked over the AT&T park, just a few minutes from Family House by foot, where we joined a group of families of kids with cancer and were given tickets and entrance to the stadium. We hadn’t told Tomas that Posey would be there, and his face petrified into a grin when the player walked in with his wife and five year-old twins. Posey answered questions from the kids, and then he and his wife shook hands with the members of each family and took a photo with each. Our picture is hilarious: Tomas’ face is still frozen; Tristan has his finger on his nose; Phoebe is desperately peeping out from behind Tomas for her 15 milliseconds of fame; Gary is standing rigidly apart as he was, he later told me, worried that Posey might be pissed if Gary smushed in close to Posey’s wife; and I’m clutching Tristan in a vice-like grip to try to contain him. Clearly all of us are going to need training in public appearances if Tomas ends up playing pro ball or Phoebe becomes a bonafide princess.

After the meet and greet, we were sent to find our seats, with instructions to put our things down and then meet at a certain place at a certain time for another pre-game event on the field. Initially we were told that this bit was for the cancer kid and one chaperone only, but the Giants lady handing out the special wristbands for field entry took one look at sweet Tomas and Phoebe and gave them bands as well. Tristan wanted Mommy to come, so Gary was left to guard the bags in our seats, happily chatting with the father of another cancer kid. The kids and I ended up with only 15 minutes to get from our nosebleed seats to the promenade level right behind home plate. We sprinted like football players through the crowds, dodging disgruntled fans. Only somewhat sweaty and discombobulated, we made it with time to spare, and were led down onto the field, where, in front of rows of cameras meant to capture the faces of pale, quiet kids battling cancer, Tristan released his inner monster. He jumped around. He was loud. He pummeled his sister. He embarrassed his brother. Somehow we made it through a photo shoot. Then we got to meet Lou Seal, the Giants mascot. And then the kids (with Tomas gripping Tristan’s wrist to keep him from destroying the field or running amok into the outfield), went out to the pitching mound while gymnast Aly Raisman threw the first pitch. Sometime during all of this, Noni (Gary’s mom) got to see Tristan on TV and Gary saw Tomas and Tristan on the big stadium screen.

Finally it was time to leave the field. The cancer families were shepherded toward the exit behind home base. There, standing next to the exit and leaning on a bat, was the Cardinals first batter up, an extremely good looking man. He raised his hand to give Tomas a knuckle bump. Bump. He then put his fist up for Phoebe, who, as usual, was in la-la land and completely missed it! She dissed Matt Carpenter’s offer of a knuckle bump! I received the bump instead, and reassured the poor guy, whose self confidence was clearly shaken, that it wasn’t intentional. He might have hit a homerun if Phoebe hadn’t overlooked his knuckle bump.

Exhausted, we returned to our seats to consume nachos, chicken strips, hot dogs, hot pretzels, hot chocolate, and beer. After being talked into getting a bag of cotton candy, I failed to monitor its consumption. Suddenly Tristan was even more bonkers, and Phoebe was completely off the wall. She started about forty “Let’s Go Giants” chants, until the energy of her fellow ball fans began to wane and they shot me wistful looks, longing for just the regular ball park noise. The Giants, who had led the whole game, fell apart in the last inning and lost, but nobody cared. The streets were crowded with happy fans the whole way back to Family House, where we all five of us slept like the dead.

The second big event of the month was Tristan’s fourth birthday, which took place this past Saturday. In planning the party, it quickly turned into an event meant to thank all of those who’ve helped us since Tristan’s diagnosis — those who’ve fed us, watched Tristan and Phoebe, cared for our animals when we’ve been gone, and done things to make life better one way or another. The weather was gorgeous and we put the spread of food under the walnut trees in the yard. Somewhere between fifty and sixty people came. The kids played loudly and happily outside. They got out every ball and scooter and toy truck, they played on the slide and swings, and they zipped on the zip line. The grown ups ate and drank. And, best of all, the Kneeland Volunteer Fire Dept rolled up with two fire engines and let the kids (and adults!) shoot the hoses until the tanks ran dry. The firemen stayed for cake (which happened to be decorated with a hook-and-ladder), then drove the trucks away with some toots and whistles of the sirens. Tristan was in heaven, and I was so happy to be surrounded by our wonderful friends. The day ended around the campfire with a few remaining, hearty Kneelanders who kindly stayed to set off fireworks and help kill the keg of beer. Many, many thanks to all of you who came to celebrate Tristan’s fourth birthday with us! It meant a lot to me to have you all there.

On Wednesday, while Tomas continued a week-long adventure with Oma in D.C., Tristan, Phoebe, and I went for mani-pedis in town. Tristan selected burgundy sparkles, Phoebe chose schoolhouse-red sparkles, and I went with a sparkle-free, subtler red.

It was a good thing Tristan’s nail job was professional grade, because yesterday (Thursday) he ended up having surgery on his left hand. It’s always good to be on your toes about personal upkeep; you just never know when something big might happen and you need to be looking your best! Indeed, Tristan was complimented on his tasteful choice of color, first in the ER by the nurses and the orthopedic surgeon, then in the OR prep by the anesthesiologists, and again in Recovery by the nurse who watched him post-op.

What the hell happened? Yesterday Phoebe, Tristan, and I took our painted toenails and fingernails to the river for one last day in the sun before school starts next week. I swam and chatted with our Kneeland friend Steve and his daughter Laurel while Phoebe and Tristan caught frogs in a stream that feeds the river. The kids had made friends with a couple of young boys who were there with their dad, and the younger brother, who might have been about six, was happily engaged in the frog hunt. They were all playing beautifully together, with zero conflict or aggression. And, so, it was all in good fun when that boy picked up a giant rock / small boulder and accidentally dropped it on Tristan’s left hand, which was resting on another boulder.

I have replayed those moments and the ones after hundreds of times since then. I never could have imagined such an accident beforehand, but now it’s burned indelibly into my brain. I watched the whole thing unfold. I wanted to shout to the boy, “Careful, that rock is too big to lift and it might fall on your toes!” But there was no time, and he wasn’t my kid, and the father had seemed unfriendly when they arrived and so I was doubly reluctant to boss his boy around. Maybe I could have gotten out just enough words (“Carefffffffuuuuuullllll…!!!”) to change the kid’s path of motion. Who knows.

Tristan hopped and screamed in the stream. I sprinted to him. There was lots of blood. I immersed the hand in the river to try to see the wound. I saw that his ring finger was split open raggedly, like a popped grape, all along one side, and I let out a string of profanity that would have offended equally East and West, North and South. (I try to be fair.) The six year-old looked on with mounting hysteria, apologizing again and again and saying he didn’t mean it. Over Tristan’s screams, I told him it’s okay sweetie, nobody thinks you did this on purpose. Another mother, a stranger, sprang into action. She handed me a clean pillowcase in which to wrap Tristan’s hand, threw our towels into our beach bag, slung our bags over her shoulder, and headed to our car. I carried Tristan. Phoebe followed. The boy’s father pulled a first aid kit from his car. Nobody had Betadine or hard alcohol — I wanted to pour it over the wound. The stranger mother put gauze tape over the finger. We were in the car at 12:23.

Laurel, who grew up on Kneeland and drives like it, zoomed us skillfully up the tight turns out of Butler Valley, then down Kneeland Road to Eureka. Meanwhile, I gripped Tristan’s bleeding hand and called our Outpatient Nurse at UCSF, who called the ER at St Joe’s to tell them an immune compromised kiddo would soon show up. I called Gary to meet me at the ER, to pick up Phoebe.

In the ER, Tristan was given the Royal / Immune-Compromised Treatment and whisked past the other waiting patients into a consult room. Nurses took vitals, an X-Ray machine was rolled in (and Tristan announced that he wants one for Christmas), the orthopedic surgeon was located somewhere in the ether between the hospital and his office, and Tristan’s excellent manicure was examined and admired. It was determined that Tristan had a fractured ring finger with a loose splinter of bone and a dislocation, and well as the enormous gash all along the side. In the OR Prep, Tristan knowledgeably explained to the anesthesiologist that today he preferred to be knocked out with an IV, rather than by breathing gas. He sat unflinchingly through the insertion of the needle. He fell asleep on the gurney (without having yet been given any drugs) and was wheeled, snoozing, into the OR. It was about 4:25pm, more than four hours after having his hand crushed, and nobody had yet given him any painkillers. He’s not allowed Motrin or Ibuprofen or anything that can mask a fever, and the St Joe’s ER nurses must not have been wont to throw morphine at a kid.

The surgery went smoothly — the wound was not dirty, the bones went back into place, and the surgeon was able to close the wound. We were wheeled to a room. Family visited, Tristan was not in pain and ate, Phoebe bestowed gifts upon her brother.

Tristan and I watched cartoons until midnight, when his hand started to hurt. The nurses no longer reluctant to give out the hardcore stuff, morphine was generously administered. Tristan slept until about 4am, then got more painkillers and slept again…until noon today! Friends, family, and the surgeon visited while he slumbered. The surgeon expects the finger to heal up just fine. (A good Humboldt County man, he has a ponytail and nine children. He told me a long and funny story about a recent family camping trip.) Infection is the real concern in a kid with leukemia, so Tristan will stay here in the hospital on IV antibiotics until this evening.

So, there you have it, the story of why keeping up the appearance of your nails at all times is important. You simply never know when a boulder will “pop open your hand,” as Tristan describes his injury.

Trauma and surgery aside, the five weeks since I last wrote has been full of fun and adventure. Tomas, Tristan, and I spent the week of August 8th in San Francisco at my brother’s apartment. Tomas attended the Giants baseball camp, where he was afforded the MVP award. We all went one afternoon after camp to the Cal Academy of Sciences, where Tomas led us on a tour. Tristan and I went with my sister-in-law to the MOMA, where Tristan enjoyed herbal tea with his Aunt Agi in a chic cafe. We hit the playgrounds. We had dinner with a high school friend of mine in the East Bay and Chinese food in Ocean Beach with my wonderful librarian friend. In between all this fun, Tristan and I went to UCSF for his IV chemo, given this time at a half dose, as concerns have not been assuaged that vinchristine is causing problems with Tristan’s vocal chords. We also saw a Ears-Nose-Throat specialist, who examined said vocal chords and believes that my son’s sometimes-scratchy voice is more likely caused by irritation from reflux associated with the steroids he takes for five days of each month.

Between other local sports camps for Tomas and arts and Discovery Museum camps for Phoebe, we had a bunch of river days (sans boulder accidents), trips to the beach and the zoo, reflexology, and a visit from good friends. Phoebe tested for and got her Advanced Yellow belt in karate and blew my mind by sparring fearlessly with her counterpart, her ribboned braids bouncing as she threw punches and landed roundhouse kicks. Finally, Tomas attended a local fair and won three 15 cent goldfish that, by now, have cost an estimated total of 200 bucks in fair entry fees, a tank and associated equipment, and replacement fish. And I thought a goldfish would be a simple solution to Tristan’s lamentations that his siblings each have a dog a he is petless.

School begins Monday, and even Tristan will go back to preschool two days a week. Gary and I agree that it’s been a good summer, and that the crazy RV trip and fun camps and other entertainments have helped smear a happy haze over last summer’s horrors. The boulder incident is a bit of a glitch, but we’ll get through it, aided perhaps by fresh nail polish once Tristan’s hand comes out of its wrappings.

It’s late, and I’m going to go climb in bed for a bit with Tristan. I’m going to hold him close, and think one more time about how I climbed into his hospital crib in the PICU a year ago tonight to snuggle him close when we were both so scared, and then I’m going to try to put that aside for a while. I’m thinking that tomorrow all this won’t feel so raw anymore.

Wednesday, June 15th

Friday, May 20th

Tristan and I drove down to the city on Monday of this week for his chemo on Tuesday, and we stayed at Family House — in its new Mission Bay location! — both Monday and Tuesday nights. The new set-up is…incredible. The non-profit’s phenomenal fundraising team found 43 million dollars for the project and, from the looks of it, they made every cent count.

In its previous set-up in the Sunset District, Family House could house thirty-something families each night. In Mission Bay, where crane silhouettes decorate the skyline in every direction and shiny new buildings sprout daily from the grounds of the former industrial zone, the new Family House can support 80 families on five floors with ten kitchens.

But it’s not the size that’s so jaw dropping. Indeed, the need is so great and the UCSF hospital social workers are pointing so many new patients families in the direction of the expanded Family House, that the new building will soon be at capacity every night. No, what’s so phenomenal is the careful consideration put into every detail. In the row of brand new orange B.O.B strollers parked along the wall of one hallway, in the Scandinavian-design wooden high chairs in each dining room, in the cushions on the steps of the central staircase that encourage a sort of “hanging out on the stoop”, and in the beautiful shiny new cooking pots hanging above each kitchen island there’s a message that’s something like this: Even though you’re staying here for free, and maybe you lost your job because you had to move here to be near your kid in the hospital, and your life has turned to shit one way or another since the diagnosis, that doesn’t mean you deserve the crummiest of everything. No, in fact, we love you and we think you deserve a little beauty and some comfort and maybe even the best of some things.

The place is beauuuuutiful. Nobody EVER stays at Family House for a good, happy reason. No woman ever stayed there to recover after delivering a chubby, cooing, healthy baby, for instance. Really, I can’t think of a single joyful medical event that would bring somebody there. But maybe in this beautiful place, those of us who stay there might be able to forget for just five minutes why we’re there. Maybe a mother sitting in the sunshine streaming through the tall family room windows will forget for just five minutes that she hasn’t yet found on the internet any other parents who can say their kid with an aneurysmal bone cyst has been cured. (I met that mom on this trip.) Maybe a teenager listening to music in the big kids’ lounge will forget for just a few minutes that his bone marrow transplant to his little sister doesn’t seem to be working. Maybe a husband and wife frying pork and onions for enchiladas, chopping tomatoes and chilis for salsa, in the bright, clean kitchen can stop worrying for a few minutes about the scary surgery one of the kids waiting at the table will have tomorrow.

Maybe none of us ever really forgets, but there’s something about the love that was put into this building that will help. It simply feels good that these folks care so much.

I have to also mention that when Family House moved, they took along their housekeeping company. This is so touching, so important. In the old place, one of the housekeepers sat down every morning to have tea and a comfortable conversation in Spanish with the mamas living on that floor. It would have been terrible if that had ended with the move, and I was so happy to see that kind woman at the new place.

Tristan and I had an excellent sleep on Monday night after our long drive, and we had a slow morning on Tuesday. We walked with the stroller to meet Susan and Noah, who were at the hospital for bloodwork, for lunch. Noah was feeling great, and the boys got along fabulously at the restaurant. After we ate, Susan and Noah walked back to Family House with us to see our new digs. They were duly impressed. Then we all headed back to the hospital as we happened to have simultaneous appointments at the clinic.

Tristan was a superstar at the clinic. A+++. Not a single tear rolled down his cheek. His lip didn’t even quiver. He played on an iPad with Noah and chatted with doctors and nurses. What an incredible difference from the previous port access tantrums! I’m so proud of him.

Tuesday evening we had dinner with Dudley Carlson, who, as the children’s librarian for the Princeton Public Library back in the 70s and 80s, was my personal book recommender and supplier throughout my childhood. Dudley, now living near Palo Alto, has stepped into that role for my kids. To supplement the three or four cardboard boxes of AMAZING kids books she has sent since Tristan’s diagnosis, she handed over to Tristan a stack of beautiful books, as well as a plastic crayon piggy bank, which was an instant hit. I very much enjoyed our dinner over a bottle of Chianti.

Wednesday’s drive home was smooth, and early, as Gary left that morning for a business trip to the UK and I wanted to be sure to be home before the school bus arrived at the top of the driveway. We managed to make it to the kids’ karate class that night, where Tristan, dressed as Captain America, defeated a second degree black belt in hand-to-hand combat. Ok, not really, but it’s a great photo and the guy was a real champ for letting it look that way.

On the first Sunday of the month, five women Kneeland friends and I ran a half marathon at the Avenue of the Giants. The weather was perfect, the friends were fabulous, and it was loads of fun. The only downside was when, around mile 9, my left knee began to complain, but we got through it. Gary and the kids were there to meet me at the finish line. In running the race, Team Kneeland raised over $2000 for the Leukemia & Lymphoma Society.

The last few weeks were filled with all kinds of…normal things for us, especially for Tristan. We went to the Discovery Museum a few times, and to the kids gym. The latter was tough for me, as he and I were last there the morning of his diagnosis. I remember sitting with him to do the warm-up stretches, which he was happy to do. But then, when it was time to get up and run around, he had only wanted to be held. His pediatrician had called while we were there to give me the results of his blood tests; my phone was on silent in a locker and I got the message to call him immediately when we left the gym. This time, Tristan was again running around and swinging from a rope. Good times.

Next trip in 26 days…

Friday, March 25th

I met Susan, Noah’s mom, downstairs in the cafe while I dashed around filling a tray in preparation to feed Tristan after he awoke, and then casually snuck Susan back into the OR with me (she knows the drill, it was easy) so we could catch up by Tristan’s bedside while I was waiting for him to come out of the anesthesia. Noah’s blood counts had recovered enough to begin another 28-day block of treatment in the hospital, so they were back in again, this time in fighting moods, ready to “kick leukemia in the ass!” I was happy to hear her say that.

Tristan had a brief tantrum after he woke to woozily discover his port accessed and tubes hanging from his chest. His lamentations only lasted a few minutes, and I’d only give the tantrum a 2 out of 10. We loaded up the stroller and made our way to the clinic for his IV chemo, now only the vinchristine. (The IV methotrexate, he now, in Maintenance, takes in pill form once a week at a dosage an order of magnitude less than the IV dose he was getting before this.) Throughout most of the clinic visit, Tristan was charming, and adorable, and sweet, and the nurses were visibly relieved. The only fussing happened when the nurses had to peel the tape off of his chest to de-access his port. Again, only a 2 out of 10 in intensity, and it was extremely dramatized. “Waaah. Waaah. Waaaaaah.” And then it was done, and Tristan joyfully made his way to the toy box to collect booty for himself and his siblings. For the first time in a long time, I left the clinic in one piece.

We made our way across the street to the new Walgreen’s to pick up Tristan’s new oral chemo meds, and the steroids he’ll take for five days out of every 28. We ended up needing to wait while a pharmacist raced across town to pick up one of the medicines at another Walgreen’s. This was a recipe for disaster, after an early morning, no breakfast, general anesthesia, and chemo, but Tristan was in SUCH a fantastic mood. We ate a picnic lunch on a bench, Tristan dressed as Darth Vader, and chatted.

New Maintenance medicines in hand, we drove back to Family House. Tristan had a good nap before my friend Kinari came to meet us. We celebrated the start to a new, safer phase of life by taking Tristan to a fabulous playground in Golden Gate Park. The place was filled with cool city kids and chic mammas speaking French and Spanish and I don’t know what else. Tristan was SOOOO happy, and he played and played on a jungle gym, pretending he was a pirate and demanding that Kinari and I keep the crocodiles away. The three of us ended the day with dinner on the outdoor patio of a restaurant, where Tristan ate heartily of pepperoni pizza.

The drive home was smooth and easy, our nineteenth since the beginning of this craziness, and the first of 33 such drives to happen during the 2.5 years of Maintenance. One down, 32 to go. It’s a way of life. No other way to see it.

Before this trip, Tristan and I had three full weeks at home, the longest stretch so far. There was good and bad, though mostly good. Bad first:

Gary plucked a tick off of Tristan. It hadn’t been on long, and wasn’t at all engorged, but the site looked SO WEIRD on Tristan’s skin. A huge purple depression in the middle, surrounded by a white ring, and that surrounded by a red, raised area. I struggled with this one — we live on a farm, ticks happen, no need to freak out. But what if Tristan was getting a nasty infection, or something worse? So I sent a photo of the bite to our outpatient nurse…who TOTALLY freaked out. I spent a few hours on and off the phone with the UCSF pediatric oncology hotline, and the the photograph, I later learned, was circulated among UCSF’s top oncologists and infectious disease docs. Lyme disease was discussed, everyone went apeshit, and Tristan was promptly put on a course of amoxicillin. And, of course, the bite looked perfectly fine in two days. The course of antibiotics was suspended and the photo archived: this is what a tick bite looks like in kid with no immune system. I’m guessing Tristan was neutropenic at the time.

On the good side, the time at home involved: a visit from Gary’s British business partner in Indonesia, Neil; a nine-mile run with him in a classic Kneeland windstorm, with some trepidation after discovering that he used to run 100-mile ultrathons, and the run peppered with Neil’s stories about tracking tigers and rhinos in the heart of Sumatra;

the ten-mile Foggy Bottoms Milk Run, accented by heavy rain and parfum de cow poop, with Tomas running the four-mile version with his best friend Leah;

and a good time had with siblings, with soccer outside, snuggles on the couch with Phoebe, and baseball coaching by Tomas.

In addition, Gary and I worked to improve mucky drainage around the horse stable while our muddy winter-coated horses looked on skeptically,

and, of great note, Phoebe ate chicken again, voluminously, after I made a roast bird one weekend. (The last time that happened was the last time I documented it in a post, back in September, I think. She’s a tough one.)

Finally, on several mornings, while Gary was in San Francisco with Neil for meetings, Tristan got to visit with the Kneeland School kids when I dropped Tomas and Phoebe. He was thrilled to be with other kids, and it was comical (sort of) to see the school children respectfully keeping their distance from Tristan, forming a semi-circle around him. Eventually they broke down when he threw his arms around the knees of some of the kids he knows best and gave them prolonged hugs.

Next appointment, April 19th!