Two weeks at home & a short trip to SF with small world encounters

Two weeks at home & deep thoughts on natural selection in horses, Sunday, September 20th

Tristan and I just arrived back in San Francisco, and, after the usual parking fiasco, are now installed again at Family House.

We had a fabulous almost-two weeks at home. A highlight for both Tristan and me was meeting the bus after school at the top of our drive. Each time we did it, when the bus pulled up, all the kids threw down their windows and waved and waved at Tristan, grinning and shouting out his name. The bus driver generously allowed a few extra moments each time, and Tristan was overjoyed, laughing and excitedly waving his hands back at the students.

A second highlight, for me, was attending Back to School Night. Oma babysat the kids while I went up on my own. It was great to reconnect with friends and I got to hold Kneeland’s newest baby throughout the event. Baby Taco, so nicknamed by the iPhone Auto Correct Fairy Godmother, is warm and snuggly and smells unmistakably of patchouli. His mama says she did not perfume him, so I’m thinking he was born that way. Either way, he’s delicious and bouncing him on my lap was a great way to listen to the teachers’ introductions. After the short speeches, I had brief chats with both Phoebe’s teacher and Tomas’. They went more or less like this: “You know where to find me, I know where to find you. Let’s chat if we need to.” Ah, one of the fine advantages of a tiny school. It’s not even possible to have trouble connecting with the kids’ teachers.

During our stay at home, Gary worked hard to finish a summer-long project to hotwire our horse pasture. It is a fact well-recognized by horse owners that horses defy all that we understand about natural selection. As an evolutionary biologist, I’m stunned that no young student has undertaken a study of the following inexplicable truth: all horses are out to kill themselves via the most expensive damages and injuries possible. Our two horses are no exception, and the hotwire project is intended to help them to NOT kill themselves. In the final phase of the project’s completion, Old Grey alias Buddy did his best to impale himself on a t-post. He wasn’t a looker before, and his efforts haven’t helped. So, now, as the rigged-up solar box charges, we’ve forked over a few hundred more bucks to the vet and Buddy has a big divot of dried flesh hanging off his nose, a scabby slash across his throat, and few stitches in his chest. He’s sort of an…an equine Frankenstein. How has this species not been pruned from the evolutionary tree? One of life’s mysteries.

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Phoebe caught a bad stomach bug while we were home. Fortunately, the rest of us were spared. Our middle kid proved, once again, what an amazingly tough little thing she is. She asked for a big bowl Friday afternoon, threw up, and didn’t stop until 2am. Never missed the bowl.

Tristan would have appeared to anyone seeing him during these two weeks to be a perfectly healthy, strong, funny little guy. He LOVES playing with his siblings, and both Phoebe and Tomas have been so great with him. He had a great time, roughnecking with his big brother, practicing archery with Phoebe, hanging out with Oma, and mucking around in the garden.

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During the stay at home, I took Tristan on both Fridays to have his blood work done at St. Joe’s. His hemoglobin and platelets haven’t dropped, while his white blood cells and neutrophils are declining. But, as our UCSF outpatient nurse has said, they’re supposed to. The chemo is supposed to wipe out his cells, we just don’t want them all wiped out at once, and we want the numbers to stay high enough to be safe. And they are staying high enough to be safe — they are not scary low, as they were at the end of July.

On Tuesday Tristan will begin another phase of his treatment called Interim Maintenance. During this phase, he’ll be given IV chemo every ten days. There are no new drugs involved — he’ll be getting methotrexate and vinchristine. Also on Tuesday, Tristan will have an echocardiogram and EKG. This is in anticipation of the subsequent phase of treatment, called Delayed Intensification. During that phase, he’ll be given a drug called doxorubicin. Doxorubicin is scary. I lose sleep over doxorubicin. It causes weakening of heart muscle in some patients. As I understand it, this EKG will be used to both make sure his heart is strong and to set a baseline — he’ll be given a similar EKG every five years from now until…dunno…to make sure there is no weakening. I’m have a lot of unpleasant, nervous anticipation about Delayed Intensification. Ug.

More soon, after Tuesday’s appointments.

Tristan’s first love, an emotional salad bar encounter & a crazy small world, Tuesday, September 22nd

Tristan has fallen in love. Stunningly beautiful Bianca is 17, Latina, and lives at Family House with her parents and older brother, who’s at SF State studying Criminal Justice. Bianca got a new(ish) pair of lungs a little over a month ago. She has needed them since she was 11, but resisted because she was too sad that someone else would have to die for her to receive them. Eventually she didn’t have a choice, that is, if she wanted to live. Last night, at the communal dinner table, she told me the whole story of the waiting list, the miraculously short wait, the seven-hour double lung transplant, the week-long general anesthesia, and the pain of waking up. She’s bright, and she’s articulate, and for the first time in years she’s now walking on her own feet instead of being pushed in a wheelchair. Tonight, again at the communal dinner table, Tristan confessed his love to her. And then called her a poo poo head. One reason he loves her is that she laughs delightedly at his poo poo jokes, which all go something like this: Knock knock. Who’s there? Cow. Cow who? Cow poo! Ha ha ha! Bianca and her family live in San Francisco’s Mission District, but…bad timing… several units in her apartment building began renovations just after her surgery, and the dust is too dangerous for her to live at home, so the family is at Family House instead.

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So, two Small World stories from today. CRAZY small world stories. Tristan and I spent the day at the hospital. In the morning, he had an echocardiogram. In the afternoon, he had a visit to the pediatric oncology clinic. In between, we had lunch at the hospital cafeteria, which is quite decent. After he selected his lunch of yogurt and strawberries, and while I was contemplating the salad bar, I ran into my friend Esme, who I haven’t seen in some time. Neither of us had an idea that the other was there. Turns out Esme is in her final year of med school at UCSF and is doing a rotation in anesthesiology. Turns out Tristan has leukemia and is doing time at UCSF for treatment. It was a bizarre, emotional salad bar encounter that culminated in a great lunch together. I first met Esme about nine years ago when she came to Indonesia to help with the launch of a joint healthcare-conservation project I was working on in southwestern Borneo…and today we ate salad together in Mission Bay.

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And the second Small World story goes like this: a few weeks ago, Tristan and I met a firefighter lady at…you guessed it!…Safeway. It was the day we were released from the hospital after Tristan had his port placement surgery. We were at the Safeway on Ocean Beach. With great excitement, we chatted with the firelady, who noted Tristan’s mask and the hospital wristband I had forgotten to remove. She asked if he was doing okay, and I explained his circumstances. She was so friendly, and so matter-of-fact, and she told us of her nephew in Mill Valley who had similarly been diagnosed with ALL when he was two, and who was at least a year into his treatment. Well, today, when we were in the clinic, and when Tristan, who no longer has private luxury suite status now that he’s beat his rhinovirus, was installed in his chemo cubicle, another woman and her young son came in and were seated in the cubicle opposite us. The mom and I got to chatting. At some point along I had asked the mother where they lived. Mill Valley, she said. It wasn’t far along in the conversation before Tristan’s firetruck obsession came to light, and the mother mentioned that her sister was a firefighter. Where? I asked. Here, in San Francisco, she said. Oh my god! I exclaimed, forgetting that I should instead say Oh Em Gee. She seemed okay at the slip up and I was relieved. Is she stationed on Judah Street? I asked. Etc etc etc. Turns out that today Tristan and I met the very nephew of the firefighter lady at Safeway a few weeks ago. The mother and I talked a lot, exchanged number and email addresses, and would both be very happy if our sons could be friends with other boys facing similar challenges. It was such a positive, fortunate experience. How on earth did we run into each other!!??

And now for the grit of today’s hospital experiences:

Tristan went completely apeshit over his echocardiogram. Bonkers. Nutso. This evening, during our going-to-sleep-chat, he explained that is was all about the gel, the sticky, gooey, ultrasound gel. Whatever. He had a massive tantrum. It was so massive that the nurse tech who was looking at his heart, pulsing and accelerating and completely freaking out while Tristan freaked out, wanted to pull the plug on the whole thing. She was worried about upsetting him any more. I tried everything. Cajoling, cuddling, yelling. Nothing worked. But no way was I going to have to do this over at a later time. I got really mad at the nurse, too, and told her that I didn’t understand why they hadn’t simply done this one of the three times (THREE!!) that Tristan has been under general anesthesia in the last few weeks. Finally I sorted things out by contorting my body into a totally unnatural position so I could nurse Tristan while the RN did the ultrasound. (Yes, Tristan is still nursing. We were so close to being done when this all started, but, honestly, it’s saved the day so many times in the last two months. It could be ages. I don’t care. Much.) Anyway, the echo got done and I apologized umpteen times to the nurse for getting mad.

Then, after lunch, when we went to the clinic for chemo, Tristan was an angel. He helped Nurse Evan to do all his vital signs, plugging this into that and taking various disposable things out of their packages, and he had the lowest blood pressure reading he’s ever had. He sat in the lap of his favorite clinic medical assistant, Karina, and told her he loved her. He didn’t wince when he had his port “accessed”, in other words, had a big needle poked into it. He was charming, and sweet, and had everyone gushing all over him. Grrrrrrrrr….after totally driving me to lose it in the Cardiac clinic earlier! The nurses gave him a birthday present — a big yellow truck — and he was in heaven. What a knucklehead.

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During these few days in the city, Tristan and I took daily walks in Golden Gate Park, including to the serene and beautiful botanical gardens. Unfortunately, the gardens could have been more serene, had Tristan not decided exactly when we are there that he was ravenously hungry, and had I not forgotten the Bummy Gummies. On one of our walks, Tristan slayed bad dragons, rescued a princess, and flew on the backs of good dragons that were actually boulders. What a fabulous place, that park is.

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Tomorrow, back to Kneeland for a week. On Thursday, Tristan will turn three!

Negotiating happiness & superhero two year-old powers

Yookini, anyone? Saturday, September 5th

As humans, we must be unique among animals in the overwhelming emotional complexity we experience. Our emotional survival depends on adjusting our expectations as new surprises unfold from day to day or year to year. Those who fail to do that end up crippled in some way or another.

Many of my women friends, other moms, have written to me or told me, in response to my communications about Tristan’s journey of the past six weeks, that they’re in awe of my strength, or of how well our family is holding things together. Of course, under similar circumstances, they would do exactly the same. They would adjust their expectations and they would not be crippled by the experience. They would negotiate happiness.

It’s stunning how one does it — negotiate happiness with oneself — so automatically, almost dumbly. A few weeks ago I was looking forward to a long-delayed vacation to Baja that Gary and I were planning, had already bought tickets for. Now, I’m looking forward to having Tristan being done with lumbar punctures next week for six weeks. Yay! Only one more lumbar puncture this month! I’m not being sarcastic. Really, that’s something that makes me happy. Even a toddler can make similar adjustments. Yesterday Tristan asked me how many days we’d spend back at Family House when we go back this coming week. Two or three, I said. He responded, “One would be good, Mommy. I want it to be one.” I told him it had to be at least two. He smiled, satisfied.. “Otay Mommy. Two is otay.” He was happy that it was two days, not three. Negotiating happiness.

But sometimes you do hit a bump, and it’s harder to re-gauge your happiness and set new targets and expectations. You just feel sad for a while. Thursday I felt sad all day. I don’t know exactly what set it off, but it sort of settled heavily on me when I dropped Tomas and Phoebe at school, my first time up to the school this school year. I was looking forward to meeting Tomas’ new teacher, saying hi to Phoebe’s teacher, and seeing friends who would be there dropping off their kids. When we arrived and Phoebe and I went inside to hang her backpack in her cubby, all of the bigger girls came to give me hugs. They were so sweet, and so grown up. Not one of them said anything about Tristan or asked about anything. They weren’t giggly or silly. They just came up, one by one, to hug me. So sweet. Suddenly I was fighting back tears. Same thing meeting Tomas’ wonderful new teacher — fighting back tears again. And again chatting with Phoebe’s teacher. I think I just realized how much I miss being here at home, and how much I love our mountaintop community, and how much it hurts to not really be here and part of the kids’ schooling and social life. And it’s brisk and Fall has come early and that’s just kind of a bummer.

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And then, Thursday evening, I was okay again. I found new things to look forward to. I made risotto and roast chicken breast for dinner. I fed the three kids before Gary got home. Tomas, as always, ate well. He always makes me feel good about my cooking. Tristan tucked into the chicken. Phoebe had before her a bowl of white rice. Phoebe would happily subsist on white rice, and is sustained and nourished by the healthy peanutbutter we coaxingly feed her by the spoonful and the almond flour Gary surreptitiously mixes into her hot cereal. But, at Thursday’s dinner, Phoebe said suddenly, “Mommy, can I have some chicken? I remember, I like chicken.” OMG. I almost fell over. She ended up eating two big helpings. It’s been years. So, now I’m looking forward to…maybe?…dare I say it?…Phoebe coming out of her starvation protest (against what, not sure). I’m looking forward to finding things she’ll eat and teaching her to love food again like she did when she was a baby. Boy she was a good eater.

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It’s been good to be home. Tristan is having a ball with his siblings. Each afternoon, Wednesday-Thursday-Friday, we walked up our ¼-mile long drive with the stroller and the dogs to meet the school bus. On Friday, Tristan walked the whole driveway on his own two feet, there and back, dressed as a Mongolian warrior. He was terrific.

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Early Monday we’ll head back to San Francisco for Tristan’s lumbar puncture and chemo on Tuesday. Tuesday will be tough. As good as UCSF is, I consider it a major systems failure when they schedule a two year-old for an OR procedure at 3pm, no food or drink after midnight the night before. This is hard enough as it is — that is simply cruel. I plan to give anyone who’ll listen, and even those who won’t — doctors, nurses, anesthesiologists, OR cleaning staff — an earful.

On a lighter note — you won’t believe this — I went to Safeway in Eureka on Thursday to stock our shelves and…you guessed it…the firetruck was there and the firemen were shopping. I think that makes it the last four times I’ve been to the grocery store. These are really powerful data. I think I’m almost ready to publish the support for my hypothesis that firefighters love to cook. Still looking into which respected journal is the right medium for this earth-shattering work.

Tristan calls his illness “yookini”. Phoebe’s got it right now, but initially she called it, “zuchinia” Yookini sounds like a good cocktail to me, a personalized martini maybe?  Zuchinia is probably Phoebe’s worst nightmare given her aversion to green things, so it’s fitting for a scary disease, I guess.

Boy superhero flies from OR in cape, sans mask; Tuesday, September 8th

Tristan is in the OR, for his intrathecal (spinal) chemo. I’m waiting to be called….and now I’ve been called, so now I’m waiting by his bed for him to sleep off the anesthetic. His superhero cape, and belt are at the end of his bed, folded neatly and placed there by one of the OR nurses. He’s still wearing the cuffs.

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He was an amazing trooper today, despite the no food/no drink order since last night. He was in a good mood, and funny, and upbeat. We watched movies in bed after we woke up this morning — I was happy for the distraction and the means to kill time without seeing food or smelling food or thinking about food. Then we went for a run. Then Tristan played in the playroom while I showered, changed, and packed up for the hospital. He put on his new (real) fire helmet, this one supplied by the Lancaster PA fire department. It’s so heavy, it makes his head fall over to one side, but he said he was thankful for the goggles when we went outside into the hot sun. “Mom, they keep the sun out of my eyes and keep fire out of the firemen’s eyes when they fight fires!”

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We walked over to a nearby fire station to see if we could have a quick visit before heading to the children’s hospital, but nobody answered our buzzes — must have been out on a call. Tristan fell asleep in the car on the way to the hospital, and we arrived at parking lot early, so he finished his nap in the car with the AC on full blast (did I mention that it’s HOT in SF?) while I cleaned out my inbox on my phone.

Shortly after one we went in, and even the wait was smooth until we started to put on Tristan’s superhero gear and realized Mommy had forgotten the mask. I tried to fashion one out of a surgical mask by ripping eyeholes into it and putting it over Tristan’s eyes, rather than over his mouth. That failed, and that’s when my boy finally cracked. Three pm, no food in about 18 hours, and Mommy forgot the superhero mask and then totally failed to make a creative replacement. That would break anyone. Luckily the tantrum was interrupted by the team — attending doctor, resident, nurses, anesthesiologist — who were full steam ahead and ready to go. And that was that. Tristan is a rockstar.

Now we’re back at Family House and Tristan is tucking into a slice of pepperoni pizza and a bag of pirate booty. He’s feeling good. A moment ago he was flying around the playroom in his superhero costume (with mask). Just 15 minutes after he opened his eyes in the OR recovery room, and the nurse gave us the usual bit about keeping him quiet for the rest of the day, and how he’s likely be exhausted, and how I should be careful not letting him do anything that requires coordination…just 15 minutes after all that, he insisted on walking out of recovery on his own feet to get a chocolate chip cookie at the cafe on the ground floor. We were discharged, headed for the cafe, and ran into the attending doctor who had just overseen Tristan’s procedure. The man was stunned. Absolutely floored. “I have to say,” he said, “I’m impressed.” None of us would have been walking like Tristan the Two Year-Old just 15 minutes after waking from general anesthesia, not to mention the lumbar puncture. I explained that his post-procedure tantrum about not having a cookie at the bedside produced a significant pulse of adrenaline that washed the remaining anesthetic from Tristan’s system. The doctor nodded in agreement. “I see,” he said.

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Tomorrow we’re heading back to Kneeland, and this time for almost two weeks. During this period, Tristan will continue a daily, oral chemo. When we return to the city, he’ll be done with Consolidation and will begin the Interim Maintenance phase of his treatment. That will consist of IV chemo every ten days for two months — so we’ll get a full week at home between trips to San Francisco. I’m looking forward to seeing family and friends and getting to be a part of Tomas and Phoebe’s school and homework routines.

The Tristan Diary Part 4: Moving into Consolidation

Surgery, Safeway, firetrucks, and a rest in San Francisco, Thursday, August 27th

It’s hot and sunny near at my brother’s apartment near Ocean Beach. Phoebe and I are watching a movie on Netflix and Oma is giving Tristan a bath. I’m tired.

Tristan and I returned to the city Sunday afternoon. Not the best timing; there was traffic from Petaluma on. We were absolutely exhausted Sunday evening.

Monday we rested, went running, and hit Safeway. At the grocery store, I was afforded the opportunity to collect additional data on my analysis of the correlation between Safeways and firetrucks. Turns out it isn’t only in Eureka that you can expect to find a firetruck in the parking lot of Safeway and a bunch of uniformed firemen (and fireladies!) shopping inside. It’s here, too! I’m going to take this field research much farther, visiting Safeways throughout the state. Or maybe if you all have additional data to send me, I can include it in this important work. A meta-analysis! Anyway, while I recorded my new data point, we got a ride in the firetruck around the Safeway parking lot. Tristan got to wear a real fire helmet and ring a firebell. It was awesome. Then, yesterday, we went grocery shopping again…and AGAIN the firetruck was there and the team was inside the store. There is simply no denying this important correlation and its implications: firefighters must LOVE to cook!

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Between trips to Safeway, Tristan and I had a hospital stay. Tuesday morning before dawn we drove to the Children’s Hospital and checked in at Surgery. Tristan wasn’t thrilled to be there again, and wasn’t happy that we’d have to sleep there, but this time around was much easier than last week, when the steroids were still high in his blood and he was outraged to be denied food for 14 hours. Shortly after 9 I held him was he was put under. This time it sucked, as he no longer had his picc line and the anesthesiologist had to use a gas. As with each OR procedure, I laid him down and left sobbing. I hate it.

I read in the waiting room, worrying and feeling sad that Tristan was having a plastic lump implanted in his chest. Yes, I get that this is a good thing, but it’s still horrible. Finally I was called into Recovery to join my baby. He took a long time to wake up, and nothing about it was as smooth as the other times. For the first time, he had been intubated and had quite a bit of irritation in his chest. He could barely talk and had a raspy cough. Eventually he woke up all the way and ate some chips. We had a wonderful nurse at his bedside, making sure he came to smoothly and was breathing ok. She arranged for our room on the sixth floor, in Hematology-Oncology, to be ready, and reported that one of our favorite nurses, Khara, from our earlier stay there, had requested us. So sweet!

We were transported upstairs. Tristan wanted to be held and fell asleep again in my arms. While he slept, our main doctors, Dr. Kumar and Dr. Sabnis, came to see us. They were able to give me, for the first time, Tristan’s “road map” — or treatment plan — for the next three years. It was not with joy that I realized the worst post-Induction part of his treatment will fall over Christmas, when we’ll have to be in San Francisco so he can have chemo four days a week. Ug. The doctors assured me that most of the time things change and the schedule is not in concrete. It’s likely those weeks will shift away from Christmas, but, if they don’t, the Giants will give us lots of gifts. The Giants!! Tomas will be jealous. Guess there’s an upside.

Tristan woke up, the doctors left, and the afternoon unfolded. We watched movies, played with a preschool kit from Noni, read books, ate (though Tristan’s appetite was not big). He wasn’t in pain, but just didn’t look good. In the evening he ran a fever, which is common post-op but was too high for the doctors’ liking. Tristan was given antibiotics and watched closely. In the meantime, I decided I couldn’t handle the drive back to Humboldt the following day, wanted to stay nearer the hospital, and wanted to save some energy for making the trip multiple times over the next few weeks. I spoke to my mom, who said that instead she and Phoebe would drive down to spend a few days with us in the city. Tristan’s fever subsided to something not-too-scary before we went to sleep, and we both actually slept fabulously and weren’t up til after 8 on Wednesday morning. Our favorite nurse Khara was back again and took great care of us. Although Tristan’s fever the night before meant a possible second night in the hospital the doctors had decided he was doing great and we’d be released later that day.

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A physical therapist came to our room to have a look at Tristan, who hadn’t complained much of leg pain in the past few days, but isn’t walking normally and has a lot of trouble going up stairs. She gave some strengthening exercises.

We were discharged a bit after one, and home at Chris and Agi’s about two. It was great to be out of the hospital and we were looking forward to Oma and Phoebe’s arrival. I prepped dinner for them and we had a great evening together. Somehow Tristan and I have settled into a routine of watching Mulan every night; we included Oma and Phoebe in our tradition last night.

In addition to a chemo given intrathecally during his lumbar punctures and the Vinchristine push he got Tuesday at the start of Consolidation, Tristan is taking an oral chemo every night this month. I have to change his diapers wearing examination gloves. The pharmacist asked if there might be anyone in the household past child-bearing age who could do the changes instead. I don’t think I need to tell you how horrible this is. Fortunately I realized before putting Phoebe in the bath with Tristan that that might not be a good idea — I don’t trust him not to chemo-pee in the bath. On the upside, Tristan is allowed to bathe post-port surgery. Modern medicine has the most amazing glues for holding skin together.

Sorry, I really slid into the depressing. Should have stuck with the fireman theme. I’ll be sure to report to you all on tomorrow’s trip to Safeway. My bet’s on there being a firetruck in the parking lot.

A rest in San Francisco and back to Family House, Monday, August 31

Kids are so weird. The other night as we were falling asleep, Tristan said to me, “Mom. Mom. I love you so much. I will never leave you in Singapore.” Now where did that come from? I mean, I love Singapore and haven’t said anything bad about it to Tristan. Guess I wouldn’t want to be left there either. I would like to eat there though…

I don’t have much medical to report on Tristan this week, as our hospital visits will be later today (Monday) for labs and again tomorrow for another lumbar puncture with chemo. He’s doing great though. Yesterday he and I took one of our many walks and he walked on his own two feet, rather than sitting in the stroller, for many blocks, probably buoyed by the camo pajamas he was wearing, plastic World War I army helmet on his head, and spotting scope in his hand. Ready for the trenches. He is also doing quite a bit more almost-running. Tristan did run fevers for several nights after last week’s surgery, but we seem to be past that now.

This past week we chose not to return home to Kneeland — just too exhausted after the surgery and hospital stay — but instead got a visit from Oma and Phoebe, who arrived at Chris and Agi’s last Tuesday evening, the day we got out of the hospital. It was so fabulous to see them, and I had positively been craving some Phoebe. We took walks to the beach, played in the Queen Wilhelmina flower garden in Golden Gate Park, drove to Chinatown where Phoebe got to indulge in the funnest-of-all pastime of kitsch-shopping, planted an herb garden, did coloring, and watched movies. One evening, while I cooked dinner, Oma played out front on the sidewalk with the two kids. They drove Tristan’s plastic fire engine around and had an absolute ball. I loved hearing their giggles. So, too, did many of the neighbors, who came over to introduce themselves to my mom and all invited the kids over to visit their places as well. It was a sweet neighborhood moment.

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This past Saturday Oma and Phoebe drove home, and Tristan and I moved back to Family House (the free UCSF-associated facility for housing out-of-town pediatric patients and their families). It was so fabulous to be able to stay at Chris and Agi’s wonderful apartment while we were more or less based here in the city for treatment, but now that we can split our time between home and SF, it seems best to give the downstairs renters a reprieve from our kid sounds, readily transmitted through the 1950s architecture.

This time Family House is a whole different ball game. It seems each floor takes on a culture of its own, depending on who the long term residents are. On our new floor, Tristan and I are the only English speakers. The place is populated by several huge Mexican-American families. I can’t tell who belongs to which family, kids and kid patients included. Several times a day, the most wonderful smells waft from the kitchen. Despite the stringent rules about food storage and hygiene, somebody is defrosting raw meat in one sink and last night’s pot of beans, which I am tempted to try, stays on the stove. I don’t mind at all — it’s way more like home. Not to mention, Tristan’s numbers are good right now and he’s not neutropenic. It’s nice to have a break from the sterile. I left my pot of rice on the stove.

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We have really been enjoying exploring the Sunset District, where Family House is located. Apparently this is the cool place to be these days. There are a million restaurants, and most of them were overflowing, crowds spilling out onto the sidewalks, all weekend. Yesterday I had Korean food for lunch and Thai food for dinner. As Tristan and I explored and walked yesterday, we saw three police actions, including flashing lights, arrests, blocked traffic, the whole deal. I had to explain to Tristan that it is not advisable to go right up to the police cars and policemen during these events, as he was hoping to do.

We are looking forward to going home after Tristan’s procedures early this week. We hope to be home to meet the school bus on Wednesday afternoon!

The Tristan Diary Part 3: Leave to go home

The week’s review: Family House & today’s clinic visit, August 11th

It’s been a whole week again, and again I’m dying to send you news. It was a really big week…

Chris and Agi had committed a long time ago to rent out their apartment from August 5th to the 10th. They left town last Wednesday for a visit to Eureka and Portland, and Tristan and I moved to Family House. Family House is an AMAZING place, providing free housing to pediatric patients (mostly, but not limited to, oncology and hematology and bone marrow transplant ones) and their families who live far from the hospital. Turns out lots of parents were sleeping in their cars while their kids were receiving treatment at UCSF. Family House has provided an incredible solution to that problem.

I was blown away by the place. It was shabby, but spotlessly clean. So many of the patients are immune-compromised for one reason or another. As such, there are rigorous standards for housekeeping in the communal kitchen and two or three communal bathrooms on each floor. Residents are asked not to go from one floor to another to limit germ transfer. Costs are cut by asking each family to wash, dry, and fold their own sheets and towels when they check out. Attached to each communal kitchen is a playroom/TV room. Family House is nominally short-term housing, but, as I learned, many of the residents live there for years at a time. The staff stand by to provide sweatshirts, free zoo passes, fans, sunscreen, and anything else a family suddenly cast in the the scene might be in need of. I was really touched by the whole place. It is SO important. The costs of long-term treatment for things like cancer are so crippling for so many people, and the most incredible volunteers and donations and fundraisers have come together to make Family House a major solution to the problem. I was so glad to be able to make use of it, and if I ever have a gazillion bucks to donate somewhere, I’ll put lots of it to Family House.

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Gary and the big kids visited while we were at Family House, and we made use of the its zoo pass and also made a trip to Berkeley to walk around a bit on my old campus. Tristan enjoyed his first taste of Blondie’s Pizza, a Berkeley institution.

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As wonderful a service as Family House is, it was really, really hard to be there. Tristan and I have more or less been in isolation until going there, first in the hospital, then at Chris and Agi’s quiet apartment. Then, suddenly, we were amidst other families suffering their own ailments and fighting their own battles, many of them much scarier than ours. Our kitchen-mates were as follows: a single mom with curly-haired baby Aria in hand and seven year-old Zurylisa who has an inoperable brain tumor entwined in her spine and six months to live (they are trying radiation); a Navajo couple with two year-old baby Joy who has SCID, better known to most of us who were kids in the 70’s as the “bubble boy disease” (the doctors are building for her, donor cell by donor cell, an immune system, and they’ve been living at Family House for a year and a half); and a couple from LA whose 18 month-old is embarking on radiation treatment this week to follow up on removal of a tumor from his abdomen. The father told me in the elevator on their way out to the hospital, “We’ll be in the hospital all week because Noah will be radioactive all week.” Fucking hell. Radioactive all week. I almost fell apart. The dad and I shook hands. “See you on the outside,” we said.

These folks were all so positive. They were experienced warriors. Zurylisa’s mother told me the girl had almost died from a respiratory infection when she was six weeks old. Her mother was out to beat the brain tumor, too. Zurylisa told me, “I’m a soldier.”

By the end of five days in Family House, I felt ready to crawl back into my hole. Guess I’m not big enough to take it. It was really hard. I wish I could change things for all of them.

After that review of our stay at Family House, it’s a bit hard to make a transition to a more positive thing, but here goes:

Yesterday we moved back to Agi and Chris’, and today we had our weekly clinic visit. It went on for ages — we were there over four hours — but if was such a good afternoon. We saw social workers and nurses who feel, by now, like old friends, Tristan got his chemo push of Vinchristine, his picc line dressing was changed, and he had labs drawn and bloodwork done. Some of his bloodwork results came in before we left, others were called in to me by three (three!!) different doctors and nurses later. (I SO appreciate their care and commitment, and would much rather they ALL call me than none call me!!). Tristan’s platelets are well into normal, healthy range at 320,000, his hemogloblin as good at 9.9, his good white blood cells have quadrupled in a week to 4.0, and…drumroll…his neutropils are are 2,460 — totally normal!! I was told the next 8-10 days will be good ones for him: his counts will be good and he’s in a pretty safe place numbers-wise. And…we were given a surprise pass to go home tomorrow for a few days!! Yay! Tristan is SO excited.

We’ll leave here tomorrow morning and be home for a few nights. This is so fabulous!

I’ll leave you with a Tristan quote of the day: “Mom, I’m kicking my sickness up my butt.” Needless to say, he means his kicking his leukemia in the ass. Go Tristan!

Periwinkle rocks, steroids suck, August 18th

Last night might have been the worst in my history of parenting. And I’ve had some bad ones. Right now we’re in the Surgery waiting room, awaiting Tristan’s end-of-Induction bone marrow biopsy and lumbar puncture. He was ordered not to eat or drink after midnight last night. Hard enough on a normal day, but this is a child who had been on high doses of steroids for 28 days. He has a raging hunger and a crawling-through-the-desert-in-search-of-an-oasis thirst. I have spent most of the last few days feeding him. He eats enough for a fireman, or many two firemen. Sometimes it seems like he’s eating enough to feed a whole fire station. He has swollen to the size and shape of a prize Halloween pumpkin. Temporarily, the doctors and nurses assure me. So, last night was almost entirely sleepless. The steroids had him so agitated, and I couldn’t settle him by feeding him or giving him something to drink. Eventually we got up and watched movies in the middle of the night. It was horrible. Lindsey Green, mother of twins, and other mammas out there, I know you hear me, Sisters.

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On the upside, when I realized yesterday evening just how bad things had gotten and that the cumulative effect of the steroids had completely turned Tristan into a crazy, ravenous, raging, monster, I finally called the 24-hour pediatric oncology service to ask when Tristan’s regimen might no longer include steroids. His pill bottle said August 17 AM was the last dose of the cycle, but no one had told me to stop giving them to him, and there were more in the bottle. A wonderful doctor on the service gave me the best news I’ve had in a while: never again will Tristan have to take steroids for a whole month straight! Phew. There will be bursts, for a few days at a time, over the next few months, but Induction is the worst part as pertains to steroid effects.

So…now we’re at the end of Induction, if you can believe it. The most intense, worst part of leukemia treatment, according to our doctors and nurses. Tristan did so well, and, again, it’s really only over the last few days that things have become almost unbearable. Soon Tristan will have a couple of procedures that will be used to assess his response to the treatments given during Induction and to create a road map for his ongoing treatment. The weekly bloodwork and Tristan’s condition all indicate that things have gone REALLY well. (Yesterday’s clinic visit showed his hemoglobin at 9, his neutrophils at 3880, and his platelets at a rockin’ 600,000). In a few days, the bone marrow biopsy we’re about to do will tell us if there are leukemia cells in his marrow and bone, and the spinal tap will show if he continues to have no leukemia in his spinal fluid and brain.

Last Tuesday, after our clinic visit, we were given a surprise leave to go home for a few days. Our visit home was fabulous, in large part, I think, because it was unplanned. No big preparations undertaken (thanks, in part, to Tristan having pretty solid immune system on this trip home and there being no need to autoclave the house from top to bottom), and no big plans made. On Wednesday, we drove home to Kneeland, making a stop in Ukiah to eat Mexican food at an outdoor restaurant with our good friends Peter and Laurel. Tristan did great on the drive and was SO happy to be on his way home.

At home, Tristan was overjoyed to be with his brother and sister again. I cooked dinner Wednesday night, and we had the best family dinner I can recall. In the past, they have occasionally been…regrettable. At this one, the kids were lively and cheerful. Nobody intentionally sang loudly to drown out his or her siblings. Everyone ate well. (Especially Tristan.) We had a hilarious conversation about how to prep Little Brother for his interview with the Make a Wish Foundation, ensuring that his wish is something we’ll all enjoy, and is not wasted on a request for a MacDonald’s Happy Meal or something equally disappointing. Thursday morning we all had a slow morning at home. Gary played with Tristan in his room, and then all three kids played together for a while…without fighting! Tristan and I had a quiet afternoon at home with Oma, who came up to our place from town. I went out for a run with my Kneeland “neighbor”, Melinda. It felt great to be home.

Friday morning Gary and the big kids left for a family reunion (his mom’s side) in Sacramento. Tristan and I headed down the hill and spent the afternoon and evening at Oma and Nagypapa’s in town. I didn’t want to be alone with Tristan at our place — I’m not super stressed out about taking care of him, but this was our first time away from our San Francisco safety network, and it simply felt better to be down in town. Also, I think we would have been sad to be at home without the rest of the family. We had a quiet afternoon and evening. Tristan is definitely low energy, but, at the same time, sort of agitated by the steroids. He doesn’t want to do anything active, but, at my parents’ sat for a long time to stack blocks and to put little plastic creatures (Trashies) into little plastic trash cans. He’s trying hard to be a good guy, but he’s not exactly filled with joie de vie. Again, I tell myself Induction is the hardest part and we’ll get through.

Back in the city, Tristan and I continued our many walks and runs. We’ve found a beautiful seacliff park at the end of Geary that overlooks Ocean Beach and Great Highway. The hike up to Geary from Chris and Agi’s is a good one!

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Yesterday I found a few minutes to read parts of a book about childhood leukemia that was given to me by the hospital social workers. I started with information about the drugs and how they work. I was interested and excited to learn that Vinchristine, which has been the chemo drug Tristan has gotten weekly throughout Induction, is derived from the periwinkle. I knew Phoebe would love this — she loves to pick periwinkle flowers, and all three kids like to crawl commando style hidden in the lush blanket of periwinkle plants on the northwest side of our house. Thumbs up for cancer-fighting plants!

I may send a follow-up email this afternoon after I have some more information. Right now I’m waiting at Tristan’s bedside in Surgery Recovery for him to wake up. He had had his biopsy and lumbar puncture and is still knocked out. After last night, I wouldn’t be surprised if he sleeps a while. Earlier I held him while he went under, and then dashed down to the cafeteria to pick up his order: french fries; pirate booty; and ranch dressing. I have them here for him to eat as soon as he’s awake and begins demanding sustenance. In a couple of hours, we’ll meet with Dr. Kumar. I have many questions to ask her about Tristan’s medications over the next week (possibly no steroids!!!!!!) and our plans to head home tomorrow. Will update!

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Follow-up on yesterday’s email: heading home!, August 19th

We’re heading home in a few minutes, for almost a full week back in Kneeland!

Yesterday afternoon we met with Dr. Kumar, our outpatient nurse Ilana, and the attending oncologist at the pediatric oncology clinic. They were full of excitement and praises and congratulations about getting through Induction so smoothly. They were almost incredulous that Tristan got out of the hospital so quickly and stayed out of the hospital, stating that most kids either stay in throughout Induction or end up back in after they develop fevers. With the exception of a fever our second night in the hospital, Tristan stayed fever-free the whole month. Yes!

I also learned that Tristan won’t be on ANY steroids for a few months. The doctors and nurses assured me that I will soon be able to recognize my son once again in appearance and behavior. In addition, they don’t expect that Tristan’s numbers will again drop as low as they did in Induction. That’s something I hadn’t understood — I thought it would get really bad again and that he’d surely again be neutropenic. Could happen, but not expected to. Yes! Finally, and because of this expectation that Tristan’s numbers will stay good, we’ve been excused from our bloodwork scheduled for next Monday.

So, our next procedure is Tuesday August 25th. It’s a big one, a real surgery. Tristan will have his port placed, get another lumbar puncture that marks the start of the Consolidation phase, and we’ll have to spend the night in the hospital. Consolidation, I learned yesterday, is focused on blasting the spinal fluid with chemo. The lumbar puncture Tuesday will be the first of three during Consolidation — three punctures, three anesthesias. I’m happy to go off steroids, but perhaps not so happy about these big procedures.

We’re packing up and heading out. Tristan is excited to go home, but today his legs hurt a lot and he doesn’t want to walk at all. This, too, is nothing that surprises the doctors. It’s a common side effect of Vinchristine and, sometimes, of the steroids. Not fun though.

I hope this week to see family and friends in Kneeland. We’ll figure out safe, outdoor ways for you to see Tristan. He’s excited to see you!

Great news!!!, August 21st

Yesterday I had a phone call from our outpatient nurse, Ilana. “This is gonna make your day,” she said. She had the results of Tristan’s Tuesday bone marrow biopsy in hand. This particular biopsy is a really important one, used to assess Tristan’s progress during Induction and then to map out his treatment plan for the next almost-three years. As I understand it, these results, together with the genetic markers, will place Tristan into either a high risk, average risk, or low risk category.

“The residual leukemia is ZERO!” Ilana said. Yippee!! That’s the best news we could have had. Of course, the treatment plan goes on for the duration, as we have to make sure to obliterate every last stinkin’ leukemia cell that is lurking here or there. But still, great news!!! I have my fingers crossed that Tristan will be assigned to a Low Risk category, which may mean some phases of treatment are less aggressive than they might otherwise be. We’ll know next week.

We are having a wonderful time at home. Tristan is SO happy to be with his siblings. Tomas deserves really special credit — he is an amazing big brother and is treating Tristan with such kindness and gentleness. Yesterday afternoon he played outside with Phoebe and Tristan for a long time. They dressed as knights and wore pretend armor and carried pretend swords. There were wagons involved and Otis, Tomas’ dog, seemed pivotal (though perhaps of his own making). I was making dinner in the kitchen and watching them out the window, wondering if I shouldn’t be letting this happen. It all seemed so…normal. But, they weren’t doing anything dangerous (after I put a stop to a plan for putting a car seat for Tristan into one of the wagons). As long as Tristan wasn’t falling and getting injured, and as long as all six hands involved were scrubbed clean afterward, I figured we were okay. So far so good! And Tristan was incredibly happy.

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Also, Tristan had his first real bath in almost five weeks. I forgot to mention that his picc line was removed on Tuesday, making way for the overdue bath. He and his sister really enjoyed their soaking, and Tristan was especially pleased to discover that he now floats…

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The Tristan Diary Part 2: The First Week Out

Tristan has been out of the hospital for a week, during which he continued his leukemia treatment as an outpatient. Below is a journal and photos of the week.

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Getting out! Wednesday, July 30th

Yesterday was our tenth in the hospital. We were excited all morning because the necessary factors seemed to be aligning for us to be discharged. We watched movies, read again all the books we had borrowed from the playroom and would soon be returning, packed, and ate. And in Tristan’s case, ate more, and more, and…He is one hungry guy.

Our visit from the doctors was great, and they brought more good news. The reports had come back on some of the genetic markers being tested in Tristan’s leukemia cells. I never before would have thought I might be happy for something called hyperploidy, but I’m overjoyed. Tristan’s leukemia is a form called hyperploidy — his leukemia cells have extra chromosomes. People with hyperploid leukemia fall into what the doctors call a “low risk” group — one with a favorable prognosis.

The doctors also wanted to know if I felt comfortable taking Tristan away from the hospital. They said many times that we are welcome to stay for a few additional days if we want. They went over the actions to be taken if anything worrisome comes up. There is an incredible system in place for helping Tristan as quickly as possible, including 24 hour numbers to call and a “VIP” card that gets Tristan into the ER immediately. I told the doctors I feel like we’re ready to go and feel comfortable with the systems in place for getting help when we need it. We’ll be back in the hospital Thursday for bloodwork and a checkup, so we’re not being cast out into the sea forever.

Nurses came to train me in cleaning Tristan’s picc line, and the hospital arranged for the supplies needed for that to be delivered to my brother’s apartment. Yesterday a pharmacist had already delivered Tristan’s drugs to me and had given me a careful explanation of each.

Around three a nurse came to discharge us! A man came to help us get to our taxi, as our belongings had magically multiplied in volume about four-fold. He transported them down the elevator in a red wagon. Handy, those wagons are. We taxied to Chris’. It felt amazing to be outside!

Tristan walked around Chris’ happily on his wobbly legs. He unpacked all of his trucks and stuffed animals. He ate a gigantic snack of salami and pistachio nuts while Chris cooked dinner. Then dinner: roast chicken, gravy, mac and cheese, rice, roasted potatoes, and broccoli, all per Tristan’s request. Also on the table was bread and triple cream St. Andre cheese, which Tristan pronounced “the best cheese ever.”

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He’s still asleep now. I’m sitting here loving how I can hear the sounds of ocean liners and sea gulls from the window. Later today: a long walk on Ocean Beach!

Thursday, July 31st

We are now safely installed at Uncle Chris’ apartment near Ocean Beach. When we arrived Tuesday afternoon, the fabulous Aunt Agi met Tristan with a huge firetruck balloon that is now decorating our room.

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Tristan seems very happy to be here, especially happy to move freely, unattached to Walter the IV rig. He is walking very unsteadily though, and he’s lost quite a bit of weight. That hits me hard, his skinny legs.

We had a nice morning yesterday, eating a long breakfast and going nowhere in a hurry. Then we suited up and headed out for a midmorning walk with Agi. Tristan was desperate to find a kids’ park, and I wasn’t finding the right way to tell him that he can’t go to kids’ parks. (I’m already searching on Craigslist for backyard equipment, so we can make Tristan his own kids’ park in Chris’ backyard.)

Only a few minutes into the walk, we had our first scare. Tristan’s lower lip started to bleed. Just a tiny, tiny bit. Maybe he had bit it, or maybe it’s simply chapped. The bleeding didn’t stop right away. as quickly as bleeding on one’s lip usually stops. We were on our way to meet Kinari, who was going to join us on our walk. I had her look right away, and she encouraged me to call our outpatient nurse, agreeing that the small cut didn’t appear to be clotting. The nurse agreed that we should come into the clinic to have Tristan’s platelets checked. He is due for them today (Thursday), but maybe needed them sooner.

I put some things in an overnight bag, as I’ve been coached by the nurses to do, installed Tristan’s car seat in Agi’s car, and Agi drove us to the hospital. We were put in an isolation room at the clinic, where Tristan was given a movie to watch and an iPad to play on. He was miserable to be back in a hospital setting to soon, but somewhat appeased by the gadgets. His blood was drawn and checked stat.

His platelets had dropped sharply since the day before, but they were still high enough to put off another transfusion until the scheduled time today. Tristan got to pick a prize from a huge bin, Agi picked us up, and we came home to Chris’s.

Phew. The whole thing was kind of like a drill. It wasn’t fun, but now we know where the clinic is and how to execute a quick, on-the-fly trip there.

Today we will head back for the transfusion and checkups after lunch.

I miss Tomas and Phoebe so much, and look forward to seeing them this evening when the rest of the gang will arrive for the weekend at Chris’ place. They seem like they are doing really well, and Gary is doing everything in his power to set up each day with fun things for them to do and family to be with them. But I miss them a ton.

Tristan has been saying often, “I know I’m sick. I know I have to take my medicines and go to the doctor. I know I have to fight my battle and make my sickness go away. But I’m just sad. I miss Tomas and Phoebe.” We talk a lot about how his sickness is going away, and that it simply takes a long time to make it go all the way away.

On a sweet note, Tristan is receiving photos of firemen in front of their trucks, holding up signs to support him, from fire stations across the country. Here are some of those, in addition to a photo Uncle Chris took for Tristan of Agi with the “Dragonfighter” firemen in New York City’s Chinatown.

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Short Friday review & giving you all a break, August 31st

Tristan is, at this moment, eating his second bowl of macaroni and cheese. For breakfast. And calling for his third.

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Yesterday was great. With Gary here for backup, I went for a long (for me) run along the beach, a walk with the kids during which Tomas heroically pushed the stroller across a hundred yards of sand so we could take Tristan to the edge of the waves, another walk with Gary and Tristan, and a quick dash to Safeway to satisfy Tristan’s demand for Annie’s macaroni and cheese. The orange kind, with bunny shapes, he specified.

Tristan does not have any scheduled appointments until Tuesday August fourth, when he’ll have his blood checked again, possibly receive platelets and blood if he needs them, and get his weekly chemo treatment of vinchristine.

So, I thought I should maybe give you all a break from my overly long, overly frequent emails. But I can’t promise there won’t be anything interesting that prompts another one. Point is, don’t worry if you don’t hear from me for a few days.

Platelets and hemoglobin and neutrophils, Oh My, Tuesday, August 4th

Here’s an update on happenings since last Friday…

GREAT news today! Tristan and I just returned home from the clinic, where Tristan’s blood was drawn and evaluated, he got his chemo push of vinchristine, and his dressing was changed. It was a LONG afternoon…but the numbers were great! Tristan’s hemoglobin has held steady at 9 (grams per deciliter) and his platelets have doubled to 75,000 (platelets per microliter) since last Thursday. (They bottomed out at 9,000 our first week in the hospital, and they’re in the 200,000s for a healthy person.) On the down side, his neutrophils are still very low, meaning he’s still extremely immune-compromised.

I was relieved for the good news, as Tristan has been fussy, low energy, coughing, and really pale for a couple of days. Back in the hospital, because he was coughing a bit, he was tested for viruses and diagnosed with rhinovirus, which, if you go to daycare or pre-school, is pretty much par for the course. But, we have to keep our eye on it, so I was taking his temperature just about every hour yesterday. No fevers, thank goodness. If he gets one it’s game over on Ocean Beach, and back to the hospital for us. Anyway, probably the virus just had him a bit down the last couple of days. On the upside, because he’s tested positive for it, he gets a comfortable isolation room with a big tv at the clinic. No chemo cubicals for the little prince!

We saw Dr. Kumar at the clinic (the fellow who works with our attending, Dr. Sabnis), and she emphasized how well Tristan is doing and how good his numbers are. We talked a bit about the schedule for the next few weeks and….drumroll…

If all keeps going this well, and the good trend is really a trend, we get to come home to Kneeland on the 18th or 19th of this month for about five days. FIVE DAYS at home!!!! That marks the end of the Induction phase of Tristan’s treatment, which is one of the two most intensive periods. After Induction (which makes me think of aliens kidnapping sleeping humans — is it just me?), comes Consolidation (which makes me think of a need for laxatives, as in Tristan’s case, a side effect of the chemo drugs). Consolidation is a less intensive phase that, we hope, will mean a few days home, and few days in San Francisco, for a month. So, keep your fingers crossed folks. Tristan the Fireman and Mama Llama are comin’ home!!

And now, just a bit on the last few days: We had a wonderful visit from Gary, Phoebe, and Tomas. Tomas golfed with Uncle Chris; Phoebe went to the Cal Academy of Sciences with Aunt Agi, her cousin Michelle, and Michelle’s five year-old twins; we all had walks together on the beach; we assembled a ride-on firetruck for Tristan (it squirts water!); and Gary and I got to see our old friend Cam, a fellow Indonesia / tropical biology person who happened to be in town. Best of all, Phoebe performed a ballet that she choreographed. It involves first a good pink fairy princess and then (costume change) a bad dark fairy. Tomas was reluctantly roped into playing a role in which he fights the bad fairy. The show was spectacular. The whole visit was fun and exhausting; Tristan and I collapsed on the couch after Gary and the kids left on Sunday. Since then, Tristan and I have been running, walking, visiting a nearby flower garden in Golden Gate park, reading, and watching Netflix. We were kind of stressed going into the clinic visit today, and are feeling great now that it’s over and went well.

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Tristan said to nurses as we left the clinic today, “Do you know, I’m awesome?” And he is.

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The Tristan Diary

A week and a half ago, my youngest son Tristan was diagnosed with leukemia. Below is a journal with a little history and an account of these last ten days.

The beginning

I had begun thinking about this as the summer of sickness for Tristan. On June fourth we were on the school camping trip. Tristan suddenly developed a cough and a fever that night. The fever lasted a couple of days, then disappeared. The cough persisted. In the middle of the month, I took him to see his pediatrician, and he was diagnosed with walking pneumonia. He was given a five-day course of antibiotics, and I was told that they would stay active in his blood for several days after he finished the course. We were instructed to come back for a check in a couple of weeks.

We returned to the pediatrician on July second. Tristan’s lungs were declared pneumonia-free, good as new. I discussed with the doctor that Tristan had run a mild fever for the last two nights. I was concerned because it seemed to line up exactly with the timeframe for when the antibiotics were expected to clear from Tristan’s blood. The doctor was not worried about it, and asked that I keep in touch with him about any additional fevers. Over the next two weeks, as the low grade fevers blipped on and off a few days at a time, I exchanged messages three times with the doctor and had several phone calls with the office. Initially the doctor was dismissive, repeating that Tristan’s lungs had sounded great. By the third message, in the middle July, the doctor agreed with my suggestion that we do a TB test (I always think of TB because of our time in Indonesia, and it can explain SO many things), and he indicated that we should examine various possibilities. He did not, however, urge me to race in. Similarly, when I asked nurses very directly on the phone, “Does the doctor want me to come in?” the response was, “No, only if you want to.” For whatever reason, in my family it is deeply steeped that it’s totally lame to be a hypochondriac. We don’t go to the doctor unless we’re told to go to the doctor. “Only if you want to” is a clear indication of hypochondria. So, I didn’t zoom in to the clinic on that day.

Last Thursday, I took all the kids to our favorite swimming hole on a nearby river. It was a beautiful, hot day. Tomas and Phoebe played happily. I was proud of Phoebe, who, in a life vest, was throwing herself into the cool water. She’s always been afraid of water and doesn’t yet swim — this was a coup. But Tristan sat listlessly in the hot sand, halfheartedly pushing some little trucks around. I was worried — two weeks ago I had brought the kids to the river for the first time in the season and he had been sitting in the same place, and he had been just like this — tired and weird and not ok. On top of everything, two days before, he had suddenly begun to limp, complaining of a pain in his left knee that was not precipitated by an injury. Just that morning, after another fever the night before, I had taken the jump and made an appointment to take him to our clinic the next morning for a TB test and repeat lung check. I was glad we were going and worried that we hadn’t gone sooner.

Friday morning I took all three kids to the clinic. We saw a nurse, who examined Tristan. She ordered up the TB test, but she was concerned and wanted Tristan to see a doctor. Tristan’s regular pediatrician was away, so he would see another doctor who Phoebe and Tomas have both seen previously, a small, energetic, Vietnamese guy whose efficiency I’ve admired on those visits. We were told to come back after lunch, and I took the kids across the street to a sushi place. Tomas was in heaven and ate three or four different kinds of rolls. Phoebe ate white rice with great joy. Tristan ate edamame. The kids loved the chopsticks the restaurant staff had prepared for them by rubber-banding a wedge of paper between one end. I have the chopsticks stood up like figurines on a counter in our hospital room. They seem important. The lunch was fun, but I had a bad feeling.

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The doctor was immediately alarmed by the combination of low fevers, leg pain, and Tristan’s paleness and number of bruises. He ordered blood work and sent us to a hospital imaging center to have Tristan’s leg x-rayed from hip to toe. I dropped Tomas and Phoebe with their noni (Gary’s mom) who lives near the hospital, and took Tristan for the x-rays. I also called the doctor’s office back to ask when the results of the blood test and x-rays would be available. I was concerned when they said Monday — the whole weekend to get through.

Saturday morning I took the kids to their gym, where Phoebe had a gymnastics class and Tristan and I had a Mommy-and-me class. Tomas messed around on some of the gym mats. Tristan happily participated in the stretches, but when it was time to move around, he wanted only to be held and had little interest in balance beams and the trampoline. We left early, as soon as Phoebe’s class was done.

At the gym, I had received a voicemail from the doctor’s office and was asked to call back, then told the doctor would call me back again and asked to keep my phone on me. I was scared.

We loaded into the car and headed to the next thing, Tomas’ baseball practice with a local competitive team.  I wasn’t sure where the fields were and we were early, so I was aimlessly driving a highway with dairy farms on either side. Tomas didn’t want to go to the practice, and I was trying to cajole him into going to this one, then deciding later if he wanted to join the team or not. I pulled over to take a call from the doctor we had seen the day before.

He reported that there was good news and bad news. Tristan’s leg looked fine. His blood did not. There was evidence of inflammation and infection. His platelets and hemoglobin were critically low. He told us to go the the ER. I begged him to call them first. He promised he would.

On the fifteen-minute drive to the hospital, I called Gary’s mother and asked her to meet me there to get the kids. I tried and failed to get Gary, and called a neighbor to go find him where he was fixing fences in a pasture and send him to the ER with a bag for Tristan.

At the ER, we were expected and immediately ushered into a room.  It was about noon. The pediatrician had said to expect a complete repeat of the blood tests, which was done in the first few hours.

It wasn’t long before a flurry of things happened, I can’t remember in what order. Tristan was given an IV needle. An ER doctor with the bedside manner of a cold, wet rock sat down and spilled out words like critically low platelets and possible leukemia. Another time the same doc popped her head into the room and asked how much I weigh. I turned to Gary and told him that meant we were to be airlifted to San Francisco, and I asked him to go home to pack me a bag, which I stupidly hadn’t done when I asked him to bring things for Tristan. I had simply thought he might be hospitalized in town, and I would be able to go home for my things. Gary’s sister Tina helped make a quick list, and Gary dashed out to make the half hour drive home, pack, and get back. Indeed, it wasn’t long before I was officially informed that we would be evacuated to UCSF. Someone mentioned the need for a bone marrow biopsy that had to be done there.

Had we been choppered out at the original estimated time, it would have been close for Gary, but plans changed and he made it back with a bag for me. The helicopter turned into a fixed wing airplane, allegedly because the chopper is slower and must be refueled in Ukiah. Tomas and Phoebe came back again with their noni and hugged their brother goodbye. The kids’ cousin Olivia came. Tina stayed with us. Soon after, Gary left to pick the kids up and head home. (Unbelievably, we were expecting guests, old friends from grad school and their two boys. I urged Gary not to cancel the visit and to get home to meet them. It ended up being a good choice; over the next few days, they helped Gary enormously and made life seem pretty fun and normal for Tomas and Phoebe.)

It was after seven when a medevac team showed up. They were kind and soft spoken and well-organized. Tristan liked their uniforms, which bore some resemblance to firefighter uniforms. There was a flurry of paper-signing and a long process of strapping Tristan into a stretcher. I hated that part, I so wanted to hold him. Tristan was a bit disappointed to be cheated of the helicopter experience, but the ambulance to the airport and airplane were also exciting. He wanted to be held to fall asleep during the later part of the flight and it sucked to see him struggle against his belts, but I could keep my hand on his head the whole time.

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At SFO we were loaded into the fanciest ambulance I have ever seen and whisked off to the UCSF Children’s Hospital. All day I had been in touch with my good friend Kinari, an MD living in San Francisco with whom I previously worked in Indonesia. It seems worthy of more than a little mention that Kinari once saved both my life and Gary’s, after we were t-boned by a bus in Jakarta, stuck in a classically terrible Indonesian hospital, and not being given the treatment we needed to make it out alive. Kinari and I touched base in the ambulance and she planned to meet me at the hospital.

We were taken to the Pediatric ICU, and there was another flurry of paperwork as the medevac guys signed off and handed us over to the hospital. Kinari arrived soon after we did and by some miracle was able to talk her way into the PICU. Tristan was caught up in a bunch of sweet, friendly nurses who set him up in a crib with an IV. I hated that I wasn’t holding him, but he was happy enough with the nurses. I don’t really remember how the time passed, but at some point I did get to hold Tristan and he nursed to sleep. Or maybe he just fell asleep.  I put him in his crib. At another point, I think when he was already asleep, the attending Dr. Sabnis and a fellow Dr. Kumar showed up and introduced themselves. They would be our primary team. We sat to talk, and Kinari was there for that. It was only a few moments before they began to talk about leukemia. Any notions I had that we had been sent down for further testing before a diagnosis could be made quickly evaporated. They already  knew, the wet rock doctor in the ER back home had known, and most likely the doctor who called me from my clinic in the morning had known.

Dr. Sabnis and Dr. Kumar were kind and respectful and explained things to me carefully without too much dumbing-down. (Kinari had wisely given them my credentials as a PhD in Biology, which I wouldn’t have done myself. It helped to get more information.) They told me they were sure of the diagnosis, and that more tests, including a bone marrow biopsy, to be administered on Monday, would determine what kind of leukemia Tristan has. They were willing to gamble that it is ALL, and they emphasized its curability. It was a godsend to have Kinari there. She asked the questions I was afraid to ask or too shocked to ask. It was a great model, and it helped make something click in me — I haven’t stopped asking questions since she showed me how to that night. In the span of that conversation, suddenly I was no longer living in Humboldt. I was living in San Francisco, at least a lot of the time. And my family was no longer living together in the same place. And the importance of being with Tristan was very clear.

The doctors left. After making me eat something, Kinari left too. The nurses insisted that Tristan had to remain sleeping in his crib and they made up a fold-out couch for me. It was a terrible night, between the beeping and the nurses coming to check Tristan and my fear for my little guy. I think it was that night that Tristan got his first transfusion. But I thought a lot, and it didn’t take me long to decide that we can do it. We can be here and there and Gary and the big kids can travel to see us and we can still be a family and get through the other end of this. We don’t have to give up our life at home, and we shouldn’t turn Tomas’ and Phoebe’s lives upside down. And Tristan should be able to go home whenever he can. I thought about the amazing alignment of factors that will make all of this possible. There are a hundred of them, but of great significance are the facts that my parents recently moved to Humboldt from the East and that my brother recently bought a multiunit building in San Francisco that he has been using for AirBnB, specifically to not get locked into longterm rentals.

At one point Tristan woke up and cried for me. I pulled down one side of the crib and climbed in to nurse him. I tried to go back to sleep on the couch but couldn’t, so I cranked the side of the crib down again and lay curled around my baby for a few hours. Eventually I climbed out again and actually slept a few hours in the early morning. I realized the importance of the training in terrible sleep I have received from Phoebe and Tristan — who needs sleep or a comfortable place to do it anyway? I don’t need much to function.

We were in the PICU for much of Sunday. I think I remember another conversation with the doctors, who thought we could move to the Hematology Oncology Unit later that day. I remember the nurses taking Tristan for a ride in a red wagon. (This hospital has red wagons all over. They seem to be the primary form of transport for kids, rather than wheelchairs.) I held Tristan a lot. Kinari visited again. A child specialist brought toys. Social workers came to offer their help in anything — housing, emotional support, anything.  In the early afternoon, an ass of a doctor visited and informed me that we needn’t be taking up space in the ICU. I replied that we didn’t want to be there anyway. I mean really, did he think I had camped myself out there of my own free will? That said, he’s the only jerk I’ve met here so far.

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The nurse laughed him off after he left and said we were welcome to stay until Tristan’s nap was over — he had fallen asleep while the doctor visited. (The doctor had seemed appalled that I nursed Tristan while he talked with me.) “Don’t listen to him. It’s the charge nurses who run this place,” the nurse said. I managed to sleep also.

Around 4:30 we were moved to Heme Onc. The nurse who met us said, “I understand you co-sleep,” and lost no time in replacing the awful crib with a bed. For Tristan the move was hard. We were told right away that we were in isolation to protect Tristan, but our window has a big view of a park on the floor below. Tristan was desperate to play in it, and desperate for a yellow plastic taxi in plain sight. The nurses brought him a different car and he was appeased for a while. We explored our room, our big tv and its movies, and the menu options. We had visits from lots of people — child specialists, the social workers, doctors, nurses. It’s a blur, but one thing is sure: they were all kind and patient and willing to talk as long I as wanted to.

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That night was rough, as Tristan had a fever, which makes everyone very nervous. There was lots going on around us all night. But he was given antibiotics and the fever broke and that was his last one to date. That was Sunday night, our first on the Heme Onc unit, which we were told would be our home for a month.

Monday, July 20th

It was a long day. Tristan was fortunately able to get into the OR earlier than expected. He was not allowed to eat beforehand, so the scheduled 2pm time was not a good one. We were there at 10am for prepping. I was disappointed when I was told that Tristan’s good white blood cell count (neutrophils) was too low for him to receive a port — too high a risk of infection — so he would instead be getting a picc line. The prep went smoothly. For a long time we were accompanied by a child specialist who played with Tristan and used a Teddy bear and toys to demonstrate what he was about to undergo. I got to hold Tristan as he was sedated.

Kinari was waiting for me in our room when I went back, so was with me waiting for the call that I could come back to the OR. It was good to have her there. The time went quickly and I received a call that all went smoothly and soon after another call that I could come back to wait for Tristan to wake up. Kinari waited with me a while and then had to leave. Tristan slept a long time and woke up in a pretty good mood, then fell back asleep until we were back up in our room.

He was a bit woozy after waking but not terribly fussy. We had a good few hours, playing in a big plastic yellow taxi that our nurse repo’ed from a playground we can see from our window.
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At 3pm two social workers, our main attending and fellow, a couple of oncologists, and I had a conference call with Gary in a conference room while a nurse and the child specialist played and painted with Tristan. The doctors gave us the final results of the marrow biopsy and spinal tap minus a last remaining test that was reported at the very end of the conversation and that was consistent with the others: Tristan has ALL, which, given everything we have learned and were experiencing over the last few days, is actually the best news we could have received. It has the highest rate of successful treatment. If you had to choose a leukemia, it would be the one to pick. Of note was that Tristan’s spinal tap showed no evidence of leukemia in his spinal fluid. We then discussed the long term treatment plan and the detailed plan for the next month. The short version is that we will be here in the hospital for 28 days, and then will go through several other phases of treatment that involve varying periods of time in the city as outpatients, or in the hospital, and time at home in Humboldt. We then discussed participation in a clinical trial. The trial is nothing alarming — there’s no locking in with it and the first month is the same no matter what. There are simply some differences in the frequency of treatment in the last and longest phase.

We played in our room all afternoon and Tristan ate almost a whole six inch pizza for dinner. We are watching Frozen on our gigantic tv right now and Tristan is playing with the night nurse’s superman flashlight. He’ll soon sleep. He has been given a light dose of morphine after saying his head hurt, typical after spinal tap. He’ll get his first dose of chemo tonight at ten.

At this point I don’t care that he didn’t get a port. We’ll manage.

Everyone here loves him. Everyone. He’s so fun and friendly and smart. Seriously, the staff can’t believe it. Tristan says his tubes and wires are a web and that he’s Spiderman.

Meanwhile, on the Humboldt homefront our friends are working on putting together an animal care team that can rotate when Gary comes here with the kids. In addition, our friend Lindsey is putting together a plan to have friends bring dinner twice a week, including on Sundays when Gary and kids are returning from their visits here. It’s an enormous relief not to have to worry about a plan for when our place is empty.

I feel very strongly that we can do this. Tomas and Phoebe can continue their lives in Humboldt and at their school and baseball and soccer, and they can still see their mom and little brother with regularity, albeit not every day. We are so fortunate to have Chris and Agi and Kinari here in SF and our amazing families and neighbors in Humboldt.

Tuesday, July 21st

Tristan is doing amazingly well.

This evening, while we were finishing dinner, he said, “Mom, it was a dood day. And now we are eating nice spaghetti, and miiiiilk, and teeeeaaa.” This is in contrast to Monday night, when he said, “Mom, I tink it was a baaaad day.”

Indeed, Monday was rough, with a million doctors and OR procedures. But yesterday we had great news: Tristan’s leukemia cells (lymphoblasts) dropped by 75% after his first chemo treatment Monday night. His neutrophils (good white blood cells) rose considerably. And he wasn’t nauseated at all, as evidenced by the volumes of food he consumed, which included multiple granola bars, a sizable pizza for lunch, spaghetti with meat sauce for dinner, string cheese, and pretzels. We did puzzles, read books, and watched movies on our cutting edge TV, which is the size of a banquet table. Tristan’s nap was three hours long, which was fabulous but for the fact that it went all the way through the hour we had scheduled for “neutropoenic” time in the playroom. Because Tristan’s neutrophils are low, we are in isolation and he cannot attend playgroups or use the playroom when others are there. We’ll try again tomorrow.

The staff here are so nice. I am incredibly happy with our attending MD Dr. Sabnis and his fellow Dr. Kumar, who are our main peeps. Dr. Sabnis helped me change Tristan’s diaper today as we chatted. That can’t be something most doctors at topnotch medical facilities do. Our oncology team is similarly warm and friendly, and it’s not lost on me that our lead oncology doctor, Dr. Dubois, is young, handsome, and shaven completely bald. There are also a bunch of nurses on our floor who keep their heads shaven, in solidarity with their patients, I’m assuming.

In addition to Tristan’s positive early response to treatment, I had some other good news when I asked Dr. Sabnis more about the longer treatment plan. It looks like as long as things go well this first month and continue to go well, Tristan and I will have opportunities to go home to Humboldt now and then even during this initial intensive six months. When we cannot leave San Francisco but can be treated as an outpatient, we can stay at Chris’ place. What an incredible relief and indescribably enormous help that is. Thank you Chris and Agi!

Wednesday, July 22nd

It was a great day. We had wonderful news in the morning when the gigantic oncology team filed into our room, one by one, like the trick of clowns loading into a VW bug. They were all smiles, happy to tell me that Tristan’s lymphoblasts are now 0.1% of what they were when we arrived. He is responding superbly to the treatment. His other numbers looked good again, with his neutrophils high enough to buy him some time outside…OUTSIDE!!! In the park that we can see on the floor below from our window! The park that has to rudely been teasing us since we moved from the ICU to the Hemo Onc ward.

Better yet, Tristan has shown ZERO nausea in response to the chemo delivered Monday night. He’s eating well, and is generally in good spirits.

Soon after noon, we were allowed outside to the park area. Tristan drove his plastic taxi there and then played on a wagon and on the rubber mat ground, piling up some small stones, for a few minutes. He got tired very fast and was ready to go inside after ten minutes or so, but then was eager to head straight for his reserved (isolated) playtime in a playroom. He LOVED it. He went from toy to toy and spent a particularly long time with a doctor’s set. He did all my vitals, set up an IV, and gave me hospital tags. He was pretty unsteady whenever he stood and tried to walk, probably a combination effect of the illness, the drugs, and the pain that he says he still has in his left leg. But he wasn’t complaining. He was really happy.
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Back in his room, he ate some granola and then had a very long nap.

After his nap, we read, watched movies, and had a bath with wipes and a wet washcloth for his hair. He was furious and performed a perfect tantrum over the bath. It’s the only thing he’s gone apeshit about so far. What a trooper.

Tonight he scored MAJOR points with the entire floor staff. I asked him, “Hey, how are you feeling? You seem like you’re doing pretty good?” He responded with a sigh, “Yeah. It’s cause all the nurses are so boootiful.” OMG. They love him.

Thursday, July 23rd

It was a doooood day, as Tristan would say.

Yesterday the oncology team came with their report around mid-morning. Tristan’s blasts are down by 100% — undetectable in his blood! Of course, they are still lurking here and there, and the data say the treatment must continue its full three-year course to ensure that we get all those little bastards. But the number was great news, as good as we could possibly hope for. Three days into treatment, and a 100% drop in the blasts. I have frequently cursed modern medicine for many good reasons, but here is one place it sure had succeeded. I’m so thankful for the many decades of good data out there and for the research that has gone into their treatment and made it so effective.

Tristan’s other numbers were good as well, though his neutrophils are still very low.

In the early afternoon, we had a visit from a case manager  / discharge manager. DISCHARGE?? I was starting to get suspicious, in a good way. On Wednesday, too, we had had a visit from an outpatient services nurse who also mentioned that powerful, magical word. I sort of cut her off, saying she must be mistaken, we’re in for the long haul. But then, after the second visit with mention of discharge, I was onto them.

When our attending, Dr. Sabnis, stopped in to chat (and again to play with Tristan), I pressed him on it, explaining how my suspicions had arisen. He apologized and explained that they had to do it this way — the risks were too high to talk of anything but a full month in the hospital. Seeing as Tristan is doing so well, and as long has he is fever-free, we may well be released sooner. I asked him to offer a most optimistic time frame. This coming Tuesday (!!!!!) he said. So, folks, keep your fingers crossed. We may be at Chris’  house next week. Chris, start cooking now…

Tristan had a pretty short nap, and then we had playtime in isolation again in the playroom. Tristan loved it, but was very tired by the end.

In the afternoon we read and watched movies. He was cranky on and off and is showing some of the side effects of the steroids, which case some kid craziness.

In the evening Gary came with Tomas and Phoebe. As both of the guys are recovering from colds, I brought Phoebe up to the room to hang out for a while. She and Tristan sat on the bed and watched Tangled while they put together a Spiderman Lego. Phoebe was a superstar, and happily handed over to Tristan a stuffed dragon she had just been given for herself. It was utterly selfless and very sweet, how she did it.

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Oma and Nagypapa came as well, in two parts. When Gary left with Tomas and Phoebe, the three of us shared a bottle of wine and talked about everything, in particular how incredible this hospital and its staff are. The nurses quietly ignored our rule-breaking. If it’s possible to imagine, it was a really nice evening.

Friday, July 24th
Today was full of family and friends coming with love and gifts, though the doctors did their rounds early and beat all of our visitors to our room. Dr. Sabnis, our attending, and Dr. Kumar came first. Sabnis reported that Tristan’s numbers remain fabulous, though his neutrophils have dropped further. He emphasized that this is par for the course.
The oncology team repeated the numbers and said that Tristan is doing fabulously. They examined Tristan’s belly with tickles and assessed his strength with high fives and knuckle bumps. They truly are brilliant. Tristan’s spleen and liver are no longer swollen, as they were when we first arrived here.

Gary and the kids arrived soon after the rounds. Tomas and Gary were feeling 100%, so they came up with Phoebe to see Tristan. Both siblings LOVE our hospital room. Tomas can’t get over the monstrous tv set and the food that one can order on the screen with the clicker/nurse-caller. Phoebe loves the ride-in taxi and the toys that we have borrowed from the playroom. At one point Tristan and Phoebe squeezed into the taxi together and, trailed by “Walter”, our IV rig, they rolled around the room.

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When the room got too small, my mom took the big kids off with her to ride the Muni back to her hotel and to meet up with my father. They divided and conquered: Tomas visited a warship with his grandfather and Phoebe and Oma shopped for running shoes for me, drank hot chocolate somewhere, and did some other touring around.

Gary spent the day at the hospital, joining Tristan and me for isolated time in the playroom, meeting with someone in Finances to assess the damage (thank goodness for good health insurance), having coffee with Kinari, who came again for a long visit (thank goodness for good friends, too). Dr. Sabnis returned for a second visit to talk with Gary, and patiently answered another million and a half questions. Gary asked him if we should consider moving to San Francisco, and Sabnis answered that no, they do everything they can to make sure these kids can stay as connected as possible with their lives and reintegrate smoothly with they can. I’m so pleased that these guys have such a comprehensive approach — it’s not just about the cells and the science, but also about these little people and their feelings.

In the late afternoon, we had a visit from Michelle, my former boss at Health In Harmony, and her husband Mike. They came bearing a gigantic bag of very welcome food.

Grandparents and kids all returned in the evening, freeing Gary and me to walk to a nearby restaurant. It was the first time I have left the hospital since arriving almost a week ago. It wasn’t a lengthy date, as we were keenly aware of the mayhem brewing in Tristan’s room, but it was good, and we were able to start talking about all of this. About our plans to make this work, about this incredible hospital, about my weird, strong feeling that this was fated and that somehow we’ve been preparing for it. (Don’t freak out, I’m not going bonkers. I promise.)

The kids were all doing great when we got to the room. Both parties — grandparents and Gary/kids — soon departed, my parents for their hotel and Gary and kids for the hospital’s Family Housing, an amazing, free, spotlessly clean communal living place for patients, especially oncology ones, and their families who. like us, live somewhere else.

Saturday, July 25th

It was a great day, again. As it’s the weekend, the gaggle of doctors doing the rounds was a small fraction of its usual size — only two. Leading it was Dr. Loh, who has replaced the handsome, shaven-headed Dr. Dubois, who sadly is moving to Boston. Dr. Loh is the top pediatric oncologist in the country and the head of an international pediatric oncology research group. I jokingly questioned her credentials. We are clearly in very, very good hands. Dr. Loh gave us the run through of Tristan’s numbers. The news remains very positive, though, not unexpectedly, his platelets, hemoglobin, and red blood cells have dropped further.

Gary, Tomas, and Phoebe arrived late morning, Phoebe did Legos with Tristan while Tomas happily explored games on a tablet that comes with our room. After a bit, Kim, a child specialist, took the big kids off to have a chat with them. She used felt cutouts to explain their little brother’s illness to them, and, when they came back, they used the same props to explain it to us. By then my parents had arrived, so they, too, got to see the lesson. Tomas and Phoebe had paid great attention and seemed to understand quite well.

All morning Tristan, who is a bit of a steroid monster right now, had been begging to go to the playroom. Over and over he had listed the people he wanted to join him there: Tomas, Phoebe, Oma, Nagypapa, Mommy, Daddy, Kim. He got his wish, and at 1pm, we ALL got to go to the playroom. All three kids were in heaven: Phoebe tucked into a new pack of playdough with a bin of playdough cutters and rollers and squishers. Tomas played board games. All three kids got into the pretend medical equipment. The grown-ups chatted.

After playtime, Nagypapa took Tomas off to the driving range and Oma took Phoebe to the aquarium.

Tristan and I napped while he got a second blood transfusion. As he slept, I watched the color return to his cheeks. When he woke, he was a chatterbox. He talked for forty minutes straight. About firemen mostly. He was passionate, and kept gesticulating and putting one hand to his heart when he had something particularly meaningful to say. “In my life, in my whole life…” he kept saying. Our nurse was rapt. It was quite possibly the cutest thing EVER. He was in SUCH good spirits that I quickly requested my own blood transfusion.

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In the afternoon we read and watched movies. Tristan insisted on having chicken for dinner so that he can be a fireman. He ate well. (I neglected to mention that yesterday he ate nine sausages. This is not a nauseated kid.)

My parents brought Tomas and Phoebe back in the evening. They watched a movie and we had a belated birthday celebration for Gary. Phoebe drew balloons on paper towels to make birthday plates and we ate chocolate fudge. It was a super fun night, and around 9:30 Gary departed with the kids for Family House.
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In yesterday’s update, I forgot to mention our visit from the music therapist. It was so fun, I have to do so here. He came around noon, when Tomas and Phoebe were still in the room, and he brought a bunch of instruments — rainmakers, shakers, drums, his guitar, a tambourine. Having been given a heads up that Tristan’s favorite song is Ivan Ulz’s Firetruck Song, he had learned it. OMG. We had a HUGE jam session. Tristan put on a pair of orange sunglasses, picked up a pair of drumsticks, and sang all the words at the top of his voice. Phoebe was jammin’ on a shaker, Tomas had the tambourine. Gary held the rainmaker. We whopped and hollered and sang our hearts out. To Phoebe’s delight, he also sang Let it Go, and for Tomas there was We Will Rock You. There’s no other way to say it: it was special, it was fun, we had a GREAT time.
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Today Tristan will get more platelets in preparation for Monday. Monday morning he will have another lumbar puncture, and Monday night he will have his second chemo treatment of vinchristine.

Sunday & Monday, July 26th & 27th

Keep your fingers crossed tonight…we’re getting out of here tomorrow if all stays well! Tristan is doing fabulously, and we’ve been told that he can move on to outpatient treatment. It’s been great to feel so safe here, in such good hands, but I began feeling stir crazy today.

Over the last few days, Tristan has really started to display the steroid effects we’d been warned about. Holy smokes. One moment he’s talking a mile a minute, with great joy, about firemen and how much he loves to eat sausages. The next moment he’s gone apeshit over the lack of sufficient sausages on his breakfast tray. I’ve been told this month is the worst. Later, when the steroids are not continuous, every day, the kids aren’t so bonkers. Let’s hope so.

Yesterday (Sunday) was busy in the morning, with a visit from Oma and Nagypapa as they headed out of town and another from Gary and the kids, also on their way back to Humboldt. We all hit the playroom again, and there was great joy when we were told Walter (our IV rig) needn’t tag along. It was nice to see Tristan moving around freely, but also hard to see how unsteady he is. He says his legs hurt.

After everyone left, Tristan and I had a quiet afternoon.

In the early evening, I went down to the lobby to meet a guy selling a great stroller on Craigslist. He just happens to live three blocks away and was willing to walk it over. (And today he texted to say that he and his wife want to help in any way they can, with a meal perhaps. What a good guy.) I’m hoping Tristan and I can use the stroller to take lots of walks at Ocean Beach, which is very near my brother’s apartment.

This morning (Monday) was rough. Tristan woke at seven and was not allowed to eat anything before his lumbar puncture scheduled for midday. He was miserable and furious. The steroids have made him monstrously hungry. For five hours he whined and periodically raged about sausages. He fell asleep just before the procedure, which was great because he was sedated without any trauma or tantrum. As soon as he was out, I dashed to the cafeteria to buy sausages, and was crushed to find that the breakfast counter had been replaced by pho soup. I cobbled together a large snack sufficient for a steroid freak and got back upstairs just in time to be told he was waking up.

We went back to our room and I laid out his horrifying meal: pirate booty, potato chips, and ranch dressing. I nervously waited for his reaction. It was a hit! Phew, I breathed a sigh of relief. He tucked in, obsessively dipping each piece of booty into the dressing. Gross.

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He was in a great mood all afternoon. We watched movies and recruited our nurse to give us fireman haircuts. Tristan wanted me to go first. I obliged, but was afraid he was going to chicken out, leaving me close to bald and him still with his golden locks! But Tristan stuck to his guns and took the plunge right after I did. The nurse turned out to be super handy with a pair of clippers, and we LOVE our new dos. I call this prophylactic hair buzzing. Tristan isn’t really losing his hair yet, but I don’t want him to. This way we can skip all that. I saved his baby locks and packaged mine up to donate to Locks of Love.
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All evening we joked with each other: Who stole my hair??? we asked each other over and over again. Tristan thought is was hilarious. So did I.

Tristan ate a fireman-sized portion of chili and rice for dinner…and crackers, and broccoli, and more rice.

Wish us luck for being discharged tomorrow!


Guessing what they’ll be

It’s incredibly fun to guess at what our children will be and do and love when they grow up. The kids give us sneak peeks now and then when they’re tiny, and then, as they grow older, start to develop real interests and are able to articulate them. Our oldest, Tomas, is already in that latter phase. Tristan, the baby, is still in the sneak peak phase. Phoebe, perpetually in the middle, is somewhere in between.

Tomas, now nine, has forever been a bit of a hedonist. One of his favorite books as a three year-old was “Bali Living”, a coffee table book with fabulous photos of Balinese villas. Not your typical toddler pick. He’d sit cross-legged on the floor and gaze at it for hours, his rich curls tumbling over his forehead. He’d point out the features he wanted to have in his villa when he grows up: the infinity pool overhung by frangipani trees; the super-sized soapstone bathtub; the spacious open-plan living room with 360 degree views of emerald rice paddies. The luxury villa is still a part of his vision, though now his big plan is to live in a penthouse apartment in a major metropolitan city, probably Manhattan, where he’ll play shortstop for a pro baseball team, probably the Yankees. Our remote mountaintop scene is not a part of the picture for him, he says. “I just want to live in a city. Why, oh why, do we live in the middle of nowhere?” he bemoans his current setup.

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Phoebe, who’s five, has strong interests, pretty typical for her age, in princesses and fairies and their glittery accessories. We fight a constant battle with her sparkle dust, which has a tendency to reappear at disadvantageous times and in the wrong places, e.g., all over the leather seats of Phoebe’s grandfather’s new car, or on Gary’s brow when he’s heading into a meeting with top people at an important organization. I’m guessing Phoebe will grow out of these things, or will at least resign herself to the minuscule likelihood of becoming a queen when she crunches the numbers on available princes in line for the throne. She does show other interests and talents that I think will be lifelong ones, and that may even portend her future career. She’s a wonderful artist, demonstrating vast patience for and focus on creative projects requiring enormous dexterity; she’ll sit for hours to draw, paint, glue, and sculpt playdough figures. A few weeks ago she was listening to music on a synthesizer keyboard her grandma bought the kids. The piece was a form of Asian muzak, something you might hear in the bathroom of a Chinese restaurant. Moved by the synthetic zither sounds, Phoebe whipped out a piece of paper and her box of markers and drew the picture that the music generated in her head: an Indian princess on a spotted pony, swathed in a mist of floating musical notes. In addition to her artistic interests, Phoebe loves being a farm girl: she likes to plant seeds in the garden, dig up worms, and harvest radishes and carrots, and the other day she had her first go with a power drill. My daughter may be an artist/organic farmer in the making.

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And Tristan…well, the sneak peaks have been loads of fun and, occasionally, if we weren’t the chilled out parents we are, some might be remotely alarming. There’s the fairly standard toddler-age fireman obsession, which recently took a new turn. At a community fire awareness event we attended, an elite team of helicopter firefighters showed up — eight tall, handsome men and one petite pretty woman. Tristan was in awe of the guys, but when he saw the woman he turned to me and, breathless with excitement, he said, “Mom, Mom! I don’t want to be fireman. No, I want to be fireLADY!” Beyond firefighters, Tristan gives us potential glimpses of his future self in the incredible costumes he wears almost every day. A few of my favorites are below, with my conjectures about what they may herald for my youngest son’s future.

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Pink Princess Fire Chief. At this young age, Tristan already knows you can be big and tough and fight fires and look pretty. May he always be comfortable with such seeming inconsistencies.

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Fairy Godmother of the Henhouse. Maybe he’ll raise poultry, using his fairy magic to confer better egg-laying on his hens.

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The bon vivant. At two, Tristan already enjoys a good foot spa. May he always know how to enjoy the small pleasures of life!

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You can never be too safe. Tristan is all for safety gear — helmets, shin guards, pads, masks, his big brother’s baseball cup, often all at once. I’m hoping this portends a future in athletics or safety gear production rather than one in automobile crash testing.

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Pro wrestling under the alias Puff the Magic Dragon. I’m hoping not…

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The Gloved Avenger de Papillon. Perhaps Tristan will be an avid naturalist and defender of butterfly habitat. Clothed only in his butterfly wings, and wielding a baseball bat to keep the log skidders at bay, he’ll bring the attention of the public to the many threats facing the monarch.

Who knows?! This one keeps us guessing…

WANTED: Nanny / Housekeeper / Cook / …

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Mother of three on a remote northern California mountaintop seeks help in childcare, not-light housekeeping, and a lot of other stuff. The position will hereafter be referred to as the Uber Nanny.

Applicants with the following expertise are asked to submit a comprehensive curriculum vitae and cover letter:

> Culinary expertise are essential. Applicants with a solid background in simple French cuisine will be considered. Those, however, with skills in and comfort with creating Asian cuisine, e.g., savory curries made with hand-mixed spices, lip-smacking sambals, and fresh sushi, will be preferred. The Uber Nanny position also requires an ability and willingness to make Nutella sandwiches with the crusts cut off.

> Powerful negotiating skills are a must. The Uber Nanny will need creative, intelligent parries to the following: “Come o-on, just one more minute on the computer…”; “Why did he get more M&Ms than meeeee…?; “How about this, you give me dessert, and then I’ll clean my room?”; and other similar arguments. All day long, over and over again. (See also Saintly patience requirement, below.)

> Previous experience on a submarine crew necessary. The Uber Nanny will occasionally/frequently be required to sleep in the tight space between a five year-old and a two year-old to administer soothing comfort alternatively to one, then the other, all night long. Personal space at those times will be comparable to, or possibly considerably less than, the sleeping space in the bunk of a submarine.

> Previous experience as a ranch hand required. The Uber Nanny should be able to muck horse poop while holding a wriggling toddler, wrangle stray hens while simultaneously reviewing the calendars of three children and scheduling their dentist appointments on a cellphone, and clean the hen house while keeping the kids from attempting to juggle the fresh eggs they just collected. The Uber Nanny will also need to erect five to ten miles of cattle fencing over the summer in his or her spare time. Ability to shoe a horse and drive a tractor a plus.

> Saintly patience is an absolute prerequisite. The Uber Nanny will not be permitted to shout at the children, tear his or her own hair out in frustration, or pull the car over with a jerk and threaten to make the kids walk home if they don’t stop fighting. Those useful coping skills are reserved for me, the mother, alone.

> Additional requirements have been stipulated by the children: Tomas requires that the Uber Nanny be able to pitch a curve ball. Tristan necessitates that the Uber Nanny be a fireman. Phoebe demands that the Uber Nanny allow her to do whatever she wants. The Uber Nanny will need to draw upon her saintly patience and negotiating skills to navigate this demand.

If you possess the above qualifications, and are motivated by interesting life experiences in fabulous places rather than by monetary incentives (Did I mention this job doesn’t pay particularly well?), please contact me via the Leave a comment button.

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The Happy Liver Express

In Indonesian culture, it’s the liver, that fabulous organ of detoxification, that is the seat of love and contentment. So, when Indonesians say “senang hati”, which translates literally to “my liver is happy”, they mean more or less what we mean if we talk of feeling happiness or joy in our hearts.

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On that bright clear morning in Pontianak, the concrete jungle capital of West Kalimantan whose claim to fame is that it sits on the equator, neither Gary nor I felt joy in our livers, nor in our hearts. We were boarding a giant speedboat for Ketapang, the nearest city to our field research site. There was no overland travel route through this part of southwestern Borneo, and, after a harrowing experience making the journey through a thunderstorm in a tiny propellor plane, we were sticking with the boat route, which meandered through the coastal waters of the South China Sea and in and out of large rivers. There was mayhem on the docks as passengers crowded to board the the Happy Liver Express, and we scrambled along with the rest of them, wanting to be sure to get our seats.

On an average day, those docks are in mayhem, but this was an above average day, the day in each year with the most mayhem physically possible throughout most of the 17,000 islands of the Indonesian archipelago. Maximum entropy, with a capital S. It was the last day of Ramadan, the Muslim month of fasting, and EVERYONE was in the process of pulang kampung — returning to their home villages — for the big celebration to break the fast the following day.

The petite stewardess, in a fresh, crisp uniform, took our tickets and cheerfully pointed out our seats. Two seats, right next to each other, one for Gary, one for me…but with an extra person comfortably seated against the window. We politely asked the stewardess if he might be in the wrong seat. “Ya, pulang kampung, ya…” she responded with tones that seamlessly melded her good nature, our (surely!) shared sympathy for the man needing to get home, and more than a touch of scolding that we could be so uncouth as to complain about having to share our seats, on this most important day, with another traveller. Indonesians are masters of delivering a clear message while keeping a neutral face and not actually saying those words. She was clearly telling us to put on our big girl panties and suck it up.

Duly admonished, with a friendly nod to the man, we squeezed our two Western-sized butts into the seats designed for two Indonesian-sized butts and already populated by one of the latter. It was tight. The man and I politely arranged our elbows out of each other’s way. The eight-hour trip began.

The first few hours of the trip were uneventful. The boat made its way out of the Kapuas River and headed south along the coast. It was hot inside the closed cabin. Indonesians avoid wind if at all possible, as contact with it unquestionably leads to the development of a much feared ailment — masuk angin, or “to take in the wind.” To my knowledge, no Westerner has ever successfully defined, genuinely understood, or actually experienced this terrible malady, but all Indonesians treat it with great fear and respect. Motorcyclists typically wear gigantic poofy ski jackets as they zigzag through the baking Jakarta traffic, bus passengers firmly close their windows against the 95 degree breeze, and babies are swaddled in thick blankets in air-conditioned malls, which, at best, plummet to a hypothermia-inducing 78 degrees. In accordance with this important tradition, every window  of the speedboat was tightly shut and most of the 60 or so passengers sat in the sweltering heat in apparent comfort. Gary and I mopped sweat from our brows. And arms. And necks. It pooled in the seats of our pants, as further evidence that Westerners are truly gross.

Lunchtime rolled around, and the stewardess, still perky and neat, handed out meals in small paper boxes to the passengers who were not fasting — pregnant women, small children, faithless Americans. After lunch came one of our favorite trademark highlights of the boat journey. The stewardess walked the aisle to collect the paper boxes and plastic utensils, which she carefully bundled into the small black plastic bags ubiquitous throughout Southeast Asia. She made her way back up to bow of the boat and out through a door. Moments later the black plastic bundles whizzed past the windows, neatly disposed of in the infinite South China Sea. Buang saja, ya! Just toss it away.

Soon after lunch, the waves became bigger and the boat rocked a bit. It was the musim selatan — the season when the waves come from the South and tend to be rougher. The captain slowed the boat and steered it closer to the shore, presumably to find gentler waters. Instead he found a sandbar, upon which he ground the boat to a halt in a position perfectly parallel to the giant waves. With each wave, the boat rocked from side to side on its long axis.

The stewardess appeared once again. A lock of hair had escaped from her bun and she had assumed a faint green tinge. She passed out black plastic bags to passengers who indicated they wanted one — most of them. A chorus of unearthly groans and retching began. Thankfully our seat-mate was of solid constitution. The stewardess made another showing to collect the bags and hand out more. She was distinctly less perky than she had been. Her white shirt had come untucked from her green skirt and she had a run in her nylons. We never saw her again on the Senang Hati Express.

For seven hours the boat rocked back and forth on the sandbar. The boat’s cabin took on the properties of a terrarium. The windows fogged. Condensation accumulated on the ceiling and it began to drizzle (inside). Moss began to grow on the seats. The walls became the world all around…The man next to me and I began an aggressive elbow-wrestling match, each of us wanting to be the one to sit with that adjacent arm at his or her side, rather than propped out awkwardly in front of the body.

Despite most of them being dismally seasick, not one of the passengers complained, or freaked out, or pitched a fit. Even the children were quiet. Indonesians are unbelievably tolerant and good natured, possibly a holdover from a long and ugly history of colonization. How else could you get through Dutch rule and Dutch food?

It was after dark when the rescue team arrived. Helicopters, flashing lights, search beams…were not a part of the mission. No, the rescuers arrived in a sampan, a wooden canoe. The boat was evacuated at a very, veerrrryyyyy leisurely pace. Four at a time, the passengers were canoed inland and into the mouth of a small river, where they were loaded onto a bigger engine boat. It took hours. The boat then chugged upstream a short distance to a village that had road access. We climbed onto a waiting bus, and, at 2am, arrived in Ketapang at our hotel. Sans baggage, we rinsed in the brown water flowing from the faucets, presumably pumped straight in from the Pawan River, and slept in our skivvies.

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The following day, after the high tide had lifted the speedboat from the sandbar, we were reunited with our baggage at the boat office. There, we encountered the man from our seats, also present to collect his belongings, as well as the stewardess, who had on a new pair of nylons. Both were cheerful and friendly — no hard feelings about the elbow war on the part of the man, and nothing but good cheer from the the girl who all but abandoned ship the previous day. Nope, we were all perfectly senang hati.

Frankie the tractor man

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Phoebe giggled and handed Frankie a pink marker. He uncapped the pen, bent over his drawing, and carefully sketched the horn of his unicorn. With a critical eye, he looked over the picture to make sure all of the necessary flourishes were present, including the wavy purple mane, thick flowing tail, and sparkly dots on the haunches, carefully applied with a new breed of glitter Crayon. Satisfied, Frankie handed over the finished product to Phoebe, who clapped her hands in delight.

I was chopping vegetables for dinner and watching the two of them with the eyes in the back of my head, questioning, once again, my parenting judgement.

Frankie is a fine product of Humboldt County’s backwoods. A tractor man, in the three summers we’ve lived on our mountaintop, he has come each one to pull a mower and then a baler through our fields. He is a kind man. He also has a striking appearance. Thanks to a checkered history with illicit substances, now behind him, he says, Frankie is short of teeth. Very. His tanktop undershirt stretches tightly over his generous belly. By the end of a day in the fields, the dust kicked up by the tractor settles thickly into the hair on his shoulders and upper back. Despite all this, he bears an uncanny resemblance to Patrick Swayze. It’s…unsettling, really, that resemblance. I have momentarily imagined Frankie in Swayze’s role in Dirty Dancy, singing “I had the time of my life…” Yikes. I quickly suppressed the image.

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When Frankie comes to mow for us, he becomes a fairly big part of our lives. He’s a social guy, and seems to like our family. He has a talent for ending up at the dinner table, and has been there for a pizza night, a chili night, and a whole lot of beers. When he’s done mowing for the day, we can count on a long period of entertainment ala Frankie. Lots of stories, half-lisped through his near-toothless gums.

Frankie has been driving heavy equipment his whole life, since growing up on cattle ranches where his father was a cowhand. He raised his daughter on his own, and tells stories of how the baby sat playing with her toys in the small space behind the driver’s seat while he moved fields. She could drive a tractor by the time she was five. Once, when she was seven, she helped him move a couple of pieces of equipment from one farm to another. A CHP officer pulled her over when he saw the little girl driving a giant tractor on the highway. Frankie, who was behind her, pulled over, too. “What the HELL is this?!” the cop accosted Frankie. Frankie responded, “Show me the law that says kids can’t drive farm rigs.” Turns out there isn’t one. Farm kids have always driven farm equipment, have always helped their parents with towing and moving and baling. In the end, the pig-tailed seven year-old re-started the rattling engine and they went on their way. Booyah.

Indeed, Frankie appears, in all his dusty, hirsute wonder, to have a way with kids. My kids love him. He draws unicorns with Phoebe, throws a baseball with Tomas, and gives Tristan rides on the tractor. In fact, such is the magnitude of Frankie’s influence on my kids that they call him Uncle Frankie and Tristan refers to all types of heavy equipment as “Frankie”. Mom, look, a Frankie!! he cries with joy as a logging truck passes us on the road. Frankie mows for our neighbors as well, and their kids also find him fabulously engaging. Their mom once emerged from her home office to find the hands of her oldest son and his friends duct-taped to individual baseball bats to lock them in proper position. The kids were delighted, not one of them the least perturbed to be handcuffed to a bat. Apparently every one of them experienced a dramatic improvement in his and her game.

Frankie’s youth may have been checkered with more than heavy equipment and illegal, trailer-brewed chemicals. Last summer, on a warm evening, Gary took Tristan out to play on the tractor, parked in our yard for the night. Tristan successfully extracted the key from the ignition of the 1965 John Deere and commenced to drop it in the waist-high grass. We tried everything — crawled through the grass on our bellies, combed the area with a metal detector, shined a flashlight around after dark — to no avail. The key to the ancient beast was lost. When Gary called Frankie to tell him, the tractor man was unflapped. “No problem,” he yawned into the phone. “I’ll hotwire it.” A man of many talents, our Frankie.

At the kitchen table, Frankie and Phoebe began another illustration — a sweet puppy doggie. They were both totally absorbed in the project. The guy clearly had a talent with kids. I began to review his specific merits: a skill in (and unique approach to) baseball coaching; a know-how of the traditional art of RePo; an intimate understanding of heavy equipment maintenance and operation; a comfort with, appreciation of, and creative ability to use duct tape. There really was a lot Frankie had to offer, and we are short of childcare on our mountain…Could we establish a Frankie Day Care? My more wholesome firehouse day care idea hadn’t panned out. Frankie could mow and bale AND watch our children at the same time! Watch those blades kids! Ooooh, a filleted My Little Pony. That’ll teach ‘em to pick up their toys from the yard. And during his lengthy breaks, he could instruct them in various useful skills that would ensure that they’d always have work! As I put the finishing touches on Frankie’s dinner plate, I began to construct the pitch I’d give the other mothers on our mountain to float the Frankie Day Care idea.

“How ‘bout another cold one?” Frankie asked, shooting me his friendliest grin, a grin that exposed a lot of empty space. The day care idea quickly dissolved as my parenting judgement reasserted itself. Maybe my kids don’t need to know how to hotwire a car after all. Who needs day care anyway? I can shower in two years, after Tristan starts Kindergarten.

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