For the first time in several months, Tristan and I are home for longer than what usually seems like just enough time to unpack, do the laundry, and pack again. This is the three-week break before Tristan starts Maintenance.

Right now he’s reaching the end, I think, of a nap that has already been three and a half hours long. The cold he developed after the scary fever a week and a half ago lingers on. Tomas and I got it too, but seem to be done with it. Tristan’s last dose of chemo was bigger than ever, the doctor attending in the clinic last Tuesday told me gleefully, “because his numbers have been SOOOO good!!” (Really, I don’t know how they can be so…so chipper about giving chemotherapy to children.) So now he’s pretty run down. Maybe this nap is just what he needs to bounce back.

In celebration of getting done with the gnarly chemos and soon moving onto once-a-month Maintenance, I sat down with my monthly planners and my emails and worked through them to calculate the following magic number: SEVENTEEN. That’s how many trips, since mid-July, Tristan and I made to San Francisco, or how many we made home, depending on how you look at it. Hard to say. That’s 9,393 miles of driving, already adjusted for the first leg down, which happened on a medevac plane. It’s also about 180 hours of driving, much of it pretty quiet and meditative. Huh, no wonder I feel so close to enlightenment…Not really, but truly there was something enjoyable about all that time for just thinking.

Last week Tomas joined us for our trip to San Francisco, and my parents also happened to be down in the city visiting my brother at the same time. Tuesday morning Tomas and I took Tristan to have his bloodwork done at UCSF. The numbers were great. As I mentioned above, this was cause to go ahead with a giant dose of chemo on Wednesday, but it also gave me an excuse to throw caution to the wind and take the kids, at Tomas’ request, to the Cal Academy of Sciences on Tuesday afternoon. Tomas, who has been there before, led Tristan, my mother, and me on a tour. What a spectacular place! I was absolutely besotted by the beautiful stingrays swimming just out of arm’s reach. Tristan was in heaven to finally get out and DO SOMETHING.

Oma treated us to ice cream from a truck after the Cal Academy — the weather was spectacular. My mom, bless ‘er, spent the afternoon with us at Family House and slogged through pages of Tomas’ independent study homework with him. That evening we met Chris and Agi and my father for dinner at a place with outdoor seating on 9th Avenue. At the table, Tristan carefully colored in an owl, all in red. He was adamant that no other colors should taint that piece of art.

On Wednesday morning we had breakfast in Golden Gate Park with my friends Tanya and Kevin, who had just been in Monterey to attach a microtransmitter to a particular hoary bat of interest to the Forest Service (talk about cool work). We kicked a soccer ball around. The sunshine and fresh air were great, but I was already feeling more than a bit of negative anticipation about that afternoon’s clinic visit.

I won’t belabor this part of the story. I’ve already described this scene so many times. So instead I’ll just quote my mom, who came with us. “It was horrible.” Everything took forever, and Tristan went bonkers. There you have it. Recently I discovered that I have online access to some of the doctors’ notes after each visit, and that, over the last couple of clinic visits, Tristan has been labelled with a “Behavioral Problem”. Here’s my favorite part: “Mom handling the problem appropriately but clearly stressed.” You betcha. I’m definitely stressed, and increasingly so as Tristan’s tantrums get worse with each visit. And the thing that kills me is that I get it. I get exactly why he’s going apeshit. There’s the basic, awful stuff like getting a needle stuck into your chest, which he can’t feel but is still a horror show, and having the adhesive tape pulled off of the access needle after each chemo, with does hurt, but that’s not really  it. The thing that drives Tristan nuts is that he is given no choice. He has absolutely no say in what’s going to happen in the end. And he’s too smart to be suckered by the decoy choices he’s given, over many minutes of negotiation, by the nurses: Would you like to sit in this chair, or in that chair? Would you like us to clean your skin with alcohol, or with Betadine? Would you like to play on an iPad, or would you like to watch a movie while we give you your medicine? None of it works. Tristan knows what’s going to happen, and he doesn’t want that gooey numbing cream on this chest or the needle poking into his chest or those tubes hanging off of him for any length of time. The doctors are clearly still wanting to use his port for the monthly clinic chemos, and are hoping that Tristan’s response will be less extreme when we’re coming less frequently. Let’s hope so…but I dunno. He’s one smart cookie.

After we finished at the clinic, and my mom and I were both in tatters, we walked a few blocks from the hospital with the boys to make a brief appearance at the grand opening of the new Family House. They won’t begin housing patients and their families there until the end of this month, but held a party to celebrate the end of the major construction. The Family House staff and the frequent — and permanent — inhabitants of the old Family House have been eagerly awaiting the chance to see the finished building. We were not disappointed. Family House’s fundraising team skillfully found 43 million dollars for the project, and, holy smokes, it’s absolutely amazing. Full of sunlight and donated Pottery Barn furniture, it looks like a boutique hotel. Nobody who stays at Family House is there for fun, so what a treat! Tomas, who craves luxury, was blown away.

My mother drove home with us on Thursday, as my father had left the city the day before. The drive was not quite so meditative as I was hoping it would be because, for the two hours to Willits, the two grownups were engaged in coaxing Tomas through another pile of homework. Torture, but it got done.

Tomas’ tenth birthday was a three-day affair, with ice cream at school on Friday, a movie and pizza down in town with friends on Saturday, and family champagne and chocolate torte on Sunday evening. From Tomas on turning ten: “It was awesome.” Phew. We passed. Gary and I congratulated each other.

This Sunday the 13th most of Team Kneeland will be doing either a 10-mile or a 4-mile warm up race — The Foggy Bottom Milk Run — in preparation for our half marathon on May 1st. We’ve had a great response to our initial requests for donations to support The Leukemia & Lymphoma Society and are already more than 50% to our fundraising target. You donate to support cancer research, we run!

http://pages.teamintraining.org/gba/yourway16/agorog

Home until March 21st!

Wednesday, February 10

Tristan and I are at Family House, this time in a new room on the fourth floor that has twice as much room as the identical, vertically-stacked rooms in which we usually stay — 203, 303, or 403. On entering the new room (after I automatically tried to jam my key into the lock on 403 to the confusion of an elderly Mr. Carl), Tristan was oddly ecstatic at the closet space. “Mom, look at the tozzit!” We had a smooth drive down to the city, with a stop in Ukiah for lunch with our good friends Peter and Laurel. In the Sunset District, we got a good parking spot less than a block away, so I didn’t go back to drop our luggage at Family House before widening my search for parking. I have a system now for pushing the jogging stroller with one hand, hanging my purse and the diaper bag from my shoulder, and dragging the rolling suitcase with the other hand. Judging from the confused looks I get, I only look partially homeless. I can see the wheels turning: Look at that poor woman dragging all that crap around. She’s got a bald child and all of her belongings with her…but that’s a high end B.O.B. stroller, and that’s one of those decent suitcases with the Swiss symbol on it…??? Maybe she’s recently homeless? Looks like she’s adjusting well.

What a week at home! Action packed. Stuff never stopped happening. I arrived home last Wednesday, the 3rd. Thursday and much of Friday were a flurry of preparation for Phoebe’s birthday, the celebrations of which were to extend for three consecutive days. The girl knows how to party. Friday afternoon, the school bus / chauffeured Kneeland kid taxi service dropped about twenty kids at the top of our driveway. They tossed their bags and gifts into the back of my car and sprinted down the ⅓-mile driveway to our house, where they proceeded to be awesome mountain kids for almost three hours. They played on the zip line, kicked soccer balls in the horse paddock, hit baseballs, hid in the secret space under the stairs, and all but hung from the rafters. Now that I think of it, I think some did hang from the rafters. (I’m considering attaching a liability waiver to the next set of birthday invitations.) We played a birthday game with prizes, had cake, and opened gifts. No major tantrums were thrown, so I consider it a success.

After the party was over, I left Gary drinking wine with the last few moms who were there to pick up kids, and I drove down the hill to join Tristan, where he was sequestered safe from kid germs at my parents’ apartment in Eureka. My brother and his wife had arrived for the weekend, and we had a mellow evening together while Gary managed a sleepover at home with two of Phoebe’s friends and one of Tomas’ friends.

The following morning, while Gary made chocolate syrup-filled crepes for the kids and reassembled the house, I got ready for the Clam Beach run, an annual race from Trinidad to Clam Beach. I ran the 8.75-mile race (not racing, just plodding steadily) with two Kneeland friends, and I had a great time. So great, in fact, that I had happy running dreams for the following two nights. Endorphins or exhaustion-induced psychosis? Dunno, but I’ll take those fabulous dreams over my other recurring dream in which I’m told I need to write JUST ONE MORE chapter before I can be finished with my dissertation. That is NOT a good dream.

My parents, Chris and Agi, and Gary and the kids met me at the finish line. After enjoying the crazy scene — the bonfire, a marching band, and goofy college kid joggers in diapers — we headed home to Kneeland for a family birthday celebration for Phoebe. Champagne and cake were consumed, additional gifts were bestowed on Ms Pheebs, and eventually we all collapsed into bed.

On Sunday I took Phoebe to have her ears pierced, her birthday gift from Gary and me. She was so excited, and so tough, with barely a wince at the moment. She’s thrilled with her pink earrings and has been carefully applying her medicine three times a day.

Finally, over the last few days Gary and a skilled carpenter friend assembled an outdoor playset that we purchased with a grant from a foundation that provides play equipment to children with cancer. Tristan is in heaven with the slide and fort and swings, and Tomas and Phoebe are equally happy. The construction of the set coincided with incredible summer-like weather, and the kids were outdoors after school until nightfall both Monday and Tuesday. It was all so…normal, if Tristan’s head wasn’t fuzzy with new chick down I might have forgotten that we’re not done yet.

Friday, February 12th

Tristan and I just arrived home. There were some really good parts to our trip to the city, and some really bad ones.

The latter first. Tristan threw a gale force temper tantrum at the clinic yesterday. The biggest ever at the clinic. In fact, the biggest EVER, period. As soon as I put the numbing cream on his chest, he screamed in my lap for 25 minutes. Eventually he crammed his furious little body behind one of the La-Z-Boy chemo chairs and continued his ranting for another 25 minutes. Dr. Sabnis, our primary doctor at UCSF, skillfully completed his examination of Tristan in that position, wedged between the wall and the chair. Tristan’s honest feelings about having his port accessed thus demonstrated, Dr. Sabnis thoughtfully suggested that, once Tristan enters Maintenance and his doses of chemo are lower, we might consider doing it via IV in his arm and abandoning the port. Um, ok! Again, I left the clinic completely tattered.

On the upside, we had a pleasant stay at Family House on Wednesday night. Remember Ivan, the young man with ALL to whom Tristan attached himself a month or so ago? Ivan’s mother fed me a gigantic plate of steaming enchiladas smothered in homemade salsa verde for dinner, therein sparing me from Rice-A-Roni or Mac ‘N Cheese scrounged from the Family House shelves. Then, Thursday morning, Rita, the Mennonite granny we befriended a couple of weeks ago, who is now staying with her daughter at a facility for recovering transplant patients, brought her granddaughter Kylie to Family House for a visit. At the clinic later, Tristan and I met up with Noah, the little boy who just suffered a relapse of ALL, and his mother. Despite Tristan’s tantrum, I had a good visit with Susan there, and we then ended up spending the night at their house in Mill Valley last night. Poor Noah is suffering all of the worst side effects of powerful chemo — mouth sores, nausea, everything — but it was good to spend time talking and drinking wine with Susan. Tristan had fun, loved the dinner Susan made, and built Lego with Noah’s big sister.

It’s crazy that in all of this horror there are things that are so…enjoyable. I have met a bunch of people I really love. Interesting, colorful, smart, kind people who are going through all kinds of shit with grace and strength. I never would have predicted that, through this leukemia nightmare, I’d end up with an assemblage of special friends. Also, I value and absolutely LOVE the time I have with Tristan (excepting port-access tantrums). I’ll be happy when this is all over, but I think I’ll miss, maybe even grieve the loss of, these one-on-one, two-day sprints to San Francisco and back. It’s positively sweet to get to Family House, push the twin beds together, and cuddle up with Tristan to read books or watch Netflix. Gary, too, has had a similar experience at home with Tomas and Phoebe.

Two more trips to the clinic over the next month before Maintenance…

Thursday, February 4th

Tristan and I spent this past Monday and Tuesday nights at Family House, where we met a mother and her son, who is a pediatric oncology patient at UCSF. A 46 year-old one. Four decades ago the man, Merit, was diagnosed with ALL, the same form of leukemia that Tristan has. Adult or child, if you have a leukemia normally found in children, you get treated in a children’s hospital by pediatric oncologists. Merit actually kicked the leukemia back when he was a kid, but just recently he sprouted his third brain tumor, courtesy of the radiation he was blasted with as a leukemia patient in the 70s. He was visiting UCSF this week to plan with his doctors the surgeries needed to remove it.

His mother, Della, and I chatted. I quickly learned that this woman, with her long, grey braid, is a warrior. An Athena maybe. She didn’t just get to move on after her son finished his treatment and was declared leukemia-free. Nope. Instead, she got to go through it all again, when two years after Merit’s diagnosis her two year-old daughter was also diagnosed with ALL. I’ve read that if you have twins, and one twin develops leukemia, then the second has a SLIGHTLY elevated risk of also developing it. But, in plain old siblings, there is NO increased chance of a second sibling developing leukemia after a first is diagnosed. Della simply beat the stats and got slammed with the MOST UNLIKELY bad luck possible. Merit’s sister made it through the leukemia, too, and is now in her late thirties with an 11 year-old child. But Della’s work goes on: she’s still caring for Merit, escorting him down to the Bay Area from his home in Mendocino and taking him to his doctors’ appointments, because his license was revoked after he had a seizure. His sister refuses to see doctors after the trauma of needles and chemotherapy and radiation when she was a toddler. She has a lump on her head now, but doesn’t want to know. This story was so awful, I didn’t know what to do with it. So I’m putting it here.

There was also a sweet side to meeting these folks. Della asked where we come from. When I told her near Eureka, she asked where. “I’m guessing you haven’t heard of it, but we come from a place called Kneeland,” I told her. She broke out in a smile. “I gave birth to one of my five babies on Kneeland,” she said. “I was in the middle of moving to Oregon and stopped in at my friends’ to have the baby.” I LOVED that. Imagine that, this woman had one of her babies on my mountain!

Please please please no radiation for us.

Last week was a good week at home, with a couple of nice days early on. We’re in a new phase with the kids, a much easier one. It has a lot to do with Tristan now being a BIG little kid (versus a baby and then a little little kid.) Now, after Tristan and I meet the school bus, and the kids are all perched on the kitchen stools, I administer snacks and start dinner HANDS FREE. This is so…amazing. There was a long period of chopping and frying with Tristan in a sling, and then another long period of having to hold him all the time or nurse him or…I don’t even know what. It simply wasn’t hands-free. These days, after the snacks and dinner prep and maybe a little artwork for Phoebe, while Tomas does his homework or gets a little computer time, Phoebe and Tristan come outside with me to play on the zip line or on the plastic firetruck or with the wagons while I feed the chickens, collect the eggs, muck the horse stalls, and feed Buddy and Bella. Tomas usually emerges eventually with a soccer ball and joins us. Phoebe does a great job watching over Tristan while I do what I need to do…and it’s an incredible thing to NOT have to watch them every second. This past week I kept noticing, again and again, that this is so much easier than it was a few months ago. I can’t believe it — my kids are GROWING UP!

Monday morning we had Tristan’s labs done. His numbers were fantastic — a totally normal CBC — so we zipped down to San Francisco, unloaded our stuff into Family House, and drove over to Ocean Beach to have dinner with Chris and Agi. Tristan entertained us all by pulling some huge beanbags over to the couch, shouting, “Cannonball!!!” and diving from the couch into the bags. It was only slightly terrifying and mostly very funny.

Tuesday afternoon Tristan had chemo in the clinic. He threw a tremendous tantrum when his port was accessed, yelling “I hate you!” at me a few times. I’m left completely traumatized and drained and depressed by this, but he was all smiles by the time we collected his prizes and left the clinic. With Tristan skipping merrily through the hallways, and me completely frazzled and trying to screw my head back on, we made our way across the hospital complex to visit Noah and his mom in the Heme Onc ward.

This time I was armed with identical Lego sets for the boys. It totally worked! While I helped Tristan build his, and Susan helped Noah put his together, Susan and I were able to chat for almost a full hour. The boys were content and happy, and there was none of the wailing and squabbling that dominated our last visit with them. Noah’s last lumbar puncture was clean, so the whole landscape around him and his family is a lot brighter than it was a couple of weeks ago.

Yesterday, Wednesday, we drove home early in time to meet the school bus, and now we’re in a flurry to prepare for Phoebe’s sixth birthday!! She’ll have a party with school friends after school tomorrow, and then we’ll have a celebration Saturday afternoon with both sides of the family. Phoebe is VERY excited about turning six!

Three more trips to the clinic over the next five weeks. Then on to Maintenance, when, we’re assured by our doctors, life will go back to sort-of-normal. Tristan can even go back to school, if he wants. Right now he’s sceptical. Why give up the good life, 100% of my time WITH MOMMY?! We’ll roll with whatever he wants, and I’ll take sort-of-normal over this.

Saturday, January 23rd

When I drove home from San Francisco last time, about two weeks ago, I felt the stress lift off of me as the miles rolled by. I had been so worried about Delayed Intensification (how could you not be, with that name?), the scary phase of Tristan’s treatment designed to wipe out most of his blood counts. I was still revved up, tense, as we crossed the Golden Gate Bridge. As we drove through beautiful Marin, the tension lifted a bit. Through Petaluma and Santa Rosa not much changed in my anxiety level, though I attribute that stasis to that bit being the most traffic-filled, aesthetically-challenged part of the drive. Then, as the city and suburbs changed first to oak-dotted chaparral and wine country, and then to redwoods and emerald green rivers swollen with this winter’s rain, my relief grew. I started to feel positively elated. We were done with DI! We hadn’t ended up in the hospital! We got to go home earlier than expected! Tristan ended up bald, or more with the do of a Franciscan monk, but, hey, hair grows back! Could have been worse! Phew, bigtime.

During the following week at home, I felt great. I felt so great that I sort of felt like we were…done. Like Tristan’s treatment was finished. It was a good feeling, totally unrealistic, chemically induced by the happy hormones that emerged on the drive north.

Then, when our outpatient nurse cheerfully told me on the phone as we discussed Tristan’s next course of treatment, “We’re going to blast him with vinchristine!!” the illusion shattered into a gazillion pieces. She explained that, in this final phase before Maintenance, Tristan would receive higher doses than before of vinchristine and methotrexate five times. Each time we’d need to have his labs drawn in Eureka, suitcases in the car, and wait for the results to ensure his blood counts are high enough to proceed. Then, we’d need to zoom down to the city for chemo the next day. To top it off, during this phase Tristan would need two lumbar punctures (spinal taps) to check his spinal fluid for leukemia and to inject methotrexate intrathecally.

I was crushed, my happy hormones flushed from my body shortly thereafter. I spent a few days being sad and just simply NOT WANTING to do these five trips.

We were delayed once, when last Friday’s labs showed Tristan’s neutrophil count to be too low to start the next phase on Tuesday. We had labs drawn again this past Wednesday, and his ANC had risen to 900, so we made the drive down. During the drive, I think I readjusted my emotions and expectations. Driving is good for that, at least for me. It’s the only time I ever just sit and think. When we arrived on 10th Ave in the Sunset District in 4 hours and 45 minutes and promptly got a parking spot about 50 meters from Family House, I was in good shape.

That was a good thing, because Thursday sucked. Tristan could not eat all day because his spinal tap was scheduled for 2:30pm (criminal, isn’t it?), to follow chemo in the clinic beginning at 10:30. He really was amazing though, and aside from the usual trauma of accessing his port (which he calls “putting on my port”), Tristan was great. In the clinic, we saw one of my favorite doctors, Dr. Robbins, a stately older lady who always wears a tailored blazer and trousers set, and I chatted for a long time with our social worker who recently moved from LA, has mixed feelings about being this far north, and hasn’t yet managed to push herself farther north than the vista point on the other side of the Golden Gate Bridge. She’s wonderful, and I always enjoy talking with her. She survived bone cancer when she was 15, and ovarian cancer in her late twenties. She has all the perspective you could possibly hope for. In addition, she has been brilliant in getting us small grants to cover some of the expenses transportation and travel to SF, and even a chunk of money to build a playset for Tristan at home.

We got through the two and a half hours in the clinic and proceeded to the OR. The night before we left Kneeland, Phoebe developed a cold. By Thursday morning, I could hear the cold in Tristan’s breathing, and he had a terrible, barky cough. We were just moments away from putting the mask over Tristan’s face when he demonstrated the cough for the anesthesiologist and she promptly nixed the whole procedure, pronouncing him way too croupy to go on. Anesthesia can restrict airways already restricted by croup. I was happy to finish at the hospital early, but miserable to think we’d have to make up this lumbar puncture soon. What a relief when our outpatient nurse called to say our doctors had agreed to just skip it altogether. Afterall, he’ll have a total of 19 of these over his three-year course of treatment, she said merrily. This one’s really not critical. Oy vey. Why were you going to do it then?! Don’t get me wrong — I love our outpatient nurse. With over 20 years of experience in pediatric oncology, we couldn’t have a better person to coordinate with the doctors, schedule all of our appointments, and put all our ducks in our row. She’s simply more…enthusiastic, yes, that’s the word, than I am about the happy miracle of chemotherapy.

We spent Thursday night at Family House, with a plan to drive home yesterday (Friday) morning. I was nervously checking Tristan’s temperature Thursday evening, worried that he’d get a fever. No fever, but Friday morning he woke with a terrible wheeze, sounding like a 90 year-old lifelong smoker or an asthmatic with a lapful of long-haired kittens or Angora rabbits. I grew up with two asthmatic siblings who frequently sounded like that, so I wasn’t hysterical, but I fired off an email to the outpatient nurse just to see what she’d say. As usual, her response came in about 4 milliseconds after I hit Send. “You should be in the ER!” she wrote. Crap. So, soon after 9am we were in the ER, and I was half expecting we’d be admitted — I even put the suitcase in the car, in case. In the end, no albuterol or epinephrine was called for, croup was the diagnosis, Tristan was given steroids to reduce the swelling in his airways, and we were out in two hours, surely an ER speed record. Per Ilana’s request, we spent another night in the city. Tristan woke this morning breathing freely.

On the drive home today we saw the most spectacular rainbow. From Sausalito to Willits that rainbow arched over the 101, one leg standing in a cow-dotted pasture or vineyard or behind a gas station, the other emerging from a slope forested by oak trees or a cloudy valley. Five, six, seven times it faded and reappeared amidst alternating cloud bursts and magical grey-skied sunshine. I’ve never seen a rainbow with such persistence, such staying power. It was marvellous. When we stopped at a gas station in Willits, I commented on it to the attendant. She called over her shoulder to her colleague, “Did you hear that, Sue? They bin chasin’ that rainbow since Sausalito!” Yep, for those of you who haven’t been here, there’s a cowboy accent that’s thick in some pockets of far northern California. Although he denies it, I’ve noticed since we moved back to his native Humboldt County that Gary sometimes slips into it. Make sure you tease him mercilessly if you hear him do it.

My peace of mind was somewhat disrupted on today’s drive home by Tristan’s new habit of repeatedly stopping and starting the portable DVD player, causing the disc to begin again and again at the very beginning with the infuriatingly aggravating advertisements. When I told him to stop messin’ with the machine, dagnabit, he responded, “Mom, just focus on your driving and let me open dis and check it again.” Twerp.

Home for nine days, then back again for the second of the last five treatments til Maintenance!

Tuesday, January 19th

We should have been in San Francisco last night. Instead we were home. When we checked Tristan’s blood counts on Friday, his ANC (neutrophil count) was only 500. Still neutropenic, and not yet high enough to begin chemo again today (Tuesday), as planned, though his platelets are at a high rebound level at 377,000 and his hemoglobin is good at 11.4.

But, THANK GOODNESS we were home instead of at Family House. If we hadn’t been home, I would not have been witness to an amazing moment in history. Last night we had a family dinner. In front of the the TV. I know, I know. Bad for your digestion, bad for your kids, etc. But it’s so fun, and we love it, and Oma just bought us all 78 episodes of the original Star Trek series, and we had contentedly settled down to watch two episodes, back to back. The kids were finished eating by the end of the first episode, and it had been a remarkably crumbly dinner involving both fried tempeh and cornbread. There were crumbs everywhere — small piles on the couch, a fine layer over the rug, a sprinkling on the dogs, and little pockets of them tucked in the folds of the kids’ pajamas. Then, suddenly…I don’t know how this unfolded…all three male members of the family were wielding vacuum cleaners. Armed with phaser-like hand vacs, Tristan and Gary went to work on the couch. Tomas deftly handled the the big push vacuum. I stood over the pile of laundry I was folding, stunned, unmatched socks hanging from both of my hands. The crumbs were sucked up, the couch was reassembled with its cushions, the vacuums were put away, and the Star Trek double feature resumed. We still haven’t discussed this event as a family. I’m afraid to bring it up. It could be denied, though I do have photo documentation.

I’ll take Tristan to do his labs again tomorrow at St. Joe’s. The suitcases will be in the car, and if Tristan’s ANC is high enough, we’ll be in the city by nighttime. Tristan will have chemo on Thursday, and I’m playing with the idea of driving straight home afterward…or we may come home Friday morning. With this recent delay, and assuming there are no others, he’s now set to enter Maintenance on March 22nd.

We found a beautiful spot to hang the 1,000 paper cranes — in the living room, above the couch, where they will bring good luck to my crumb-dropping kids. I hope you’ll all come to see them!

Saturday I took all three kids to visit a fire station down in town. The firemen didn’t hesitate to pull out an engine from the garage, have the kids help them hook a hose to the truck, and let them shoot an orange cone over with the jet of water. Even Phoebe was thrilled, and it was pretty clear that the firemen like playing with the truck and the hose as much as the kids do. It was a joy to watch them all having fun. I’d still like to suggest that firehouses offer daycare. Still working on where to submit that proposal.

Tuesday, January 12th

We’re home!

Last Friday, the 8th, Tristan and I got up early and headed to the UCSF children’s hospital to have his blood counts checked. His blood was drawn by 8:30. With fingers crossed, we headed over to the Heme Onc floor to visit our friends from Mill Valley while we waited for the results. Our outpatient nurse had told me on Wednesday that if Friday’s labs showed enough of a rise in Tristan’s neutrophil count, we’d be able to head back north. If his ANC remained below 200, it was a no-go, far too dangerous to risk heading home. We had been away from home for three weeks, during which Tristan received his most intensive treatment so far. And, I hope, ever.

Noah, the boy a bit older than Tristan who recently suffered a relapse of his leukemia, is pretty miserable right now, stuck in the hospital, being hit hard with lots of chemotherapy and steroids, and feeling crummy. So, while his mom and I talked, our two bald boys squabbled over Noah’s toys. We tried desperately to get a picture of them together, a photo that someday, when they’re big, they can look at together while we all celebrate having gotten through this shit. The endeavor was a total failure, even with the promise of a puppy for each of them. Instead Noah’s mom and I have a series of blurry pictures of both boys wailing and swatting at each other. Oh well. Honestly, it was a bit funny — I mean, Tristan and Noah don’t have the slightest sense that they should be friends just because they both have leukemia — and I like Susan a ton, whether or not our sons will be buddies.

In less than an hour, the lab results were posted on Tristan’s internet hospital chart. Soon after, our outpatient nurse Ilana called to say, “Go home!”. His platelets were up to an almost normal level at 132,000, his hemoglobin had stayed good at 10.1 since the New Years transfusion, and his neutrophils had bounced higher than expected, up to 390. Still neutropenic, but no longer very scary low.

As we left the hospital, we ran into Ilana. With a big smile, she said, “Yay, you’re at the end of DI [Delayed Intensification]!” Definitely something to be celebrating. She turned to Tristan and asked him, “So, what’s the first thing you’re going to do when you get home?!” The expected answer was something like, “Kiss my Daddy!” or “Play with my brother and sister!” Instead, without hesitation, unblinkingly, totally automatically, Tristan responded in a matter of fact tone, “Wash my hands.” Ilana and I were in stitches. Although, poor Tristan, where’s the joy in that response? (Every time we walk in our door, I ask Tomas, Phoebe, and Tristan, “Ok, what’s the first thing we’re gonna do?” and, well, you know the answer.) Ah well, if the worst that comes out of this is obsessive hand-washing, I’ll be thankful.

We arrived home Friday evening. Since then, I have had several opportunities to go running on our mountain, once with a group of my fabulous Kneeland friends, and also in town. We had a second, late Christmas with Gary’s family, which was loads of fun. Tristan and I have been to my parents’ down in town on several mornings, and I’ve been trying to excavate shelves and closets in our house to make room for last month’s mother lode of Christmas presents. How can we accumulate SO MUCH stuff? Best of all, over the last few days, Tristan and Phoebe have been playing like the best of friends. She is a terrific big sister, and wants to take good care of her little brother. They must be in one of those stages where their 2.5 year age difference is insignificant, and they can play together in a way that’s fun for both of them. Though not necessarily safe. Yesterday I intervened, slightly, after Phoebe tied a rope around her brother’s waist and was pulling him down a (snowless) slope on a sled. He does have platelets now, but…well, maybe we need to wait on the stunts.

We’re here through Sunday, and heading back to the city on Monday. Tuesday Tristan will begin a phase of treatment called Interim Maintenance 2, which is identical to the phase we did just before Delayed Intensification. IM 2 will involve five trips to the clinic for chemo over the next two months. And then…yes!…on March 15th Tristan will enter Maintenance, which will involve one trip per month for chemo over the next two and a half plus years. I know, it’s still daunting, but right now, after what we’ve been through since July, once a month seems like…a piece of cake.

Wednesday, January 6th

Yesterday my mother received on Tristan’s behalf a gift of a thousand tiny paper cranes from a Japanese woman who is often her check-out clerk at the Co-op in Eureka. They chat a few times a week while Oma is paying for her groceries, and the clerk knows that her grandson is fighting leukemia. In Japanese tradition, folding 1000 origami cranes can make true a wish, and often the focus is on recovering from an illness. There is a famous story of a young girl who developed leukemia after Hiroshima, and whose classmates helped her fold the 1000 cranes before she died. I remember reading the story when I was about twelve, and I remember how sad it was.

But, thankfully, it’s not 1945, and, if there’s one thing with which the last four or five decades of medical research has gotten it right, it’s leukemia. So Tristan won’t go the way of Sadako Sasaki. But the cranes can’t hurt, and I do believe the more positive thoughts people send in Tristan’s direction, the better. Chemo and cranes, a winning combination. I SO look forward to hanging those beautiful, colorful birds in a kitchen window when we get back to Humboldt.

Whenever I see the cranes, I’ll be reminded of all the incredible people Tristan and I have gotten to know during this wild journey, including, via my mother, the Japanese Co-op cashier. The number keeps growing. I’m thankful for what I’ve learned from them about the amazing strength people, some of whom have nothing else, posses inside of themselves. I’m thankful that I’ve seen firsthand how much most Americans are struggling right now with money and education (as in, not being able to get either). I think it’s safe to assume that Family House and the UCSF pediatric oncology clinic are a reasonable representation of the 99% of this country that is not astronomically rich. And, well, lots of the people I meet are toughing it out on some level. One way or another, I’d like whatever I do with the rest of my life to be addressing this in some way or another. Vague, I know, but I’m working on it.

Among those I’ve met, I hope to be lifelong friends with the family of the little boy from Mill Valley who has just had a relapse. I’ve seen them many times over the last few weeks, both when I’ve visited them in the hospital after our own visits to the clinic, and also when Tristan has had procedures in the hospital. Last time in we were in adjacent rooms. I like them so much, and I’m so sorry for what they’re going through. The mom and I have talked about about our two families going together to a free summer camp for pediatric cancer patients and their families.

And then there’s Ivan and his wonderful Mexican mother and father, who fed me an incredible, spicy breakfast yesterday morning. Tristan continues to adore 19 year-old Ivan and his lovely family, and tired, unwell Ivan continues to tolerate Tristan sitting on his lap in front of the TV set in the family room. The other day, after learning with perfect pronunciation a few words in Spanish from Ivan’s mother and eating a spicy quesadilla she made for him, the woman pronounced Tristan Mexican. We are so proud of the honorary title!

And in every conversation with Rita, the Mennonite granny from South Dakota, I’m awed by how cool this old lady is. Yesterday she told me that, a year ago, she and her husband, who is still a licensed, practicing nurse, sold their house and were just weeks away from moving to Belize to do volunteer medical work. That plan was shelved when her daughter’s liver began to fail.

On the sadder end of the array of people I’ve met is June, a teenage girl from Richmond with whom I spoke the other day when I was scrounging another floor’s kitchen at Family House for a decent skillet. She was in a wheelchair, and I asked her why. “I was shot in the knee,” she told me. Caught in the crossfire on Halloween. I was horrified. I mean, I know it happens. Gun control is one of the biggest news items these days. But I had never before actually met anyone who’d been shot. In crossfire. In a housing project. She’s a nice kid. I hope the best for her, but it’s not going to be easy. Yesterday, from our bedroom window, I saw her very stressed-out mom trying to get her, and her two little brothers, and their luggage, and her crutches, and a giant cardboard tray of ramen noodle packets, into the car, late for a doctor’s appointment from where they would then drive home to Richmond. It looked like life was seriously tough. Mom was extremely stressed.

And, way, way far on the sad end, maybe even sadder than the couple from Arkansas I met a couple of months ago (the ones who had been living in their car) are a father and son who showed up at Family House two nights ago with some kind of guardian, a man who drove them to San Francisco from their home in Siskiyou County and seems to get them around to their appointments. The son is about sixteen and is very strange looking. Turns the poor kid has spina bifida. The father is an old man with a long pony tail. His legs are terribly crippled and he walks laboriously with crutches. In the past, he was a tree faller and a miner. They live on the side of a mountain. Said you could safely shoot a cannon out their front door and not hit anybody. The mother went crazy and left them a few years ago, the father said. He looks like he has lived a tough, hard life. Both father and son wear faded blue jeans and old plaid flannel shirts. The same ones, three days in a row. They smell vile. Not a criticism, not a judgement. Just reality. They can clear the family room faster than a bomb threat. I’ve been afraid to let Tristan near them. We’ve been told over and over again that handwashing is of the utmost importance to keeping Tristan safe, and these guys are off the scale for lack of personal hygiene. What a tough life those guys live, it seems. And what will that boy do when the old man passes away? The dad looks in dreadful health.

Not long ago Tristan and I got back to Family House from having his labs drawn at the hospital. Rita, the elderly Mennonite woman came into the kitchen, where I am typing, with a huge smile on her face. She had just gotten word that her daughter in the hospital will get a new liver tonight after midnight. What joy! But bittersweet, right? Something is going on at the other end. A life passing, and then an ice cooler on a truck or in an airplane on its way to San Francisco, and then a new life with a different body here.

Tristan’s lab draw brought good news. His counts have already reached their nadir and are heading back up! His hemoglobin has held steady at 10.3 after his transfusion, his platelets are up to 49,000 from 36,000 two days ago, and his neutrophils are at 150 from 60 at the last draw. I am enormously relieved. I’ve written a lot about how stressful this phase of Tristan’s treatment has been for me and about how much I dreaded it. And now we’re almost through it. Of course, my first question to our outpatient nurse was, “Can we go home yet?” We talked through it. Although the numbers are escalating and the trajectory is good, we’re not yet out of the woods. Tristan is still so badly neutropenic that fever is a serious danger. We don’t want to end up in the ER in Eureka and med-evaced again to UCSF. So, we’ll wait until Friday, do his labs again, and then make a plan. We could be home by the weekend! Fingers crossed.

Friday, January 1st

Tristan and I are in the hospital, where he’s covering a white board with black squiggles while he finishes his New Years transfusion cocktail of 240mls O negative blood. While the red juice dripped into his body, he had a spectacular nap and the color returned to his cheeks. He woke happy, instead of rambling verbal aggressions at everyone, as he had been before the cocktail.

We came into the hospital this morning to have Tristan’s blood counts checked, something we’re doing every other day now. The clinic is closed today, so we had to be admitted to the Heme Onc floor for the day. We were hoping for a quick stop in, but Tristan’s hemoglobin levels had dropped low enough (to 7.2) to warrant a transfusion. At 58,000, his platelets are dropping quickly, but don’t yet need a re-up. His ANC is 340 — neutropenic. And what’s so weird about all this is that he’s exactly where he’s supposed to be. We would have to be worried for a WORSE reason if his counts weren’t dropping. That would mean the chemo wasn’t working.

When I last wrote, Tristan had just finished the first of two four-days-in-a-row chemo stints, and it was just before Christmas. On Wednesday the 23rd, Tristan was happy to leave the clinic de-accessed, meaning without tubes hanging from his chest. We returned to my brother Chris’ apartment and embarked on the tortuous final 24 hours before Christmas, while the kids climbed the walls and the grown-ups all stated, once again, their commitment to never again laying out the gifts prior to Christmas Eve. (When I was growing up, the gifts spontaneously appeared on Christmas Eve, thus reducing child insanity leading up to the holiday and increasing the magic of the night.)

While we rode out the kids’ angst, we had some great walks, once around a pond in Golden Gate Park, where we saw a giant herd of raccoons (it was weird, indeed), and another around a golf course in the park. My sister Nikki was with us from Massachusetts, and she played a critical role in corralling children.

Christmas Eve (when we celebrate Christmas) was a joy, the kids in heaven. Tomas was immersed in Legos, Tristan in a suit of armor and a glider bike, Phoebe in a colorful peacock costume. Family House had, in its infinite kindness and generosity, arranged for donors to buy gifts on a wish list provided by each of the families who stay there — didn’t matter that we weren’t spending the holiday there — so our family was Secret Santa-ed (or really NOT-SO-SECRET-Santa-ed) to an extreme. To put it succinctly, if I hear any one of my three kids even suggest that they felt cheated or let down by this strange Christmas away from home, chemo or no chemo, I’ll give him or her a giant nuggie. A very special Christmas was generously bestowed upon them, by my parents who came to be with us for a full two weeks, by my brother and his wife, who let us use their beautiful apartment, by my sister who flew across the country to be with us, and by the amazing Family House and its donors.

Gary left a couple of days after Christmas, and, on the Sunday after Christmas, Tristan started another four-day chemo stint. On each day, either Tomas or Phoebe went with us to the hospital or clinic in the morning. In the afternoons, Oma heroically stepped up to take Tomas and Phoebe out on the town, visiting both the aquarium and the Cal Academy of Sciences with them. Tristan’s energy declined over the week, and he became neutropenic, so we were doubly cautious and avoided public places entirely.

At one point when Tristan and Phoebe were fighting about something, I scolded them. Phoebe whined to me that Tristan had been hitting her. Tristan turned to his sister and said, “You know, Phoebe, it’s because my counts are dropping. That’s why I’m cranky.” So, there you have it: a new excuse. He’s already repeated it several times. Smartass.

We’re back at Family House now, after our day at the hospital. We moved back here on the second to last day of the old year, when my parents drove the kids back to Humboldt and the day before my brother and Agi got home from Christmas with her family in Hungary. Tristan is now, after his New Years cocktail, exuberant. He’s bouncing off the walls. He’s making jokes. He’s happy as a clam. I want a blood transfusion, too.

As seems to be emerging as a pattern for each stay at Family House, I’ve already had another profound experience here. Tonight, when I was cooking Tristan a late dinner after coming home from the hospital, we met Ivan, a 19 year-old Mexican-American kid who has ALL, the same form of leukemia that Tristan has, but at the wrong age. What a nice young guy, with his loving mama and papa there with him. It’s his first time out of the hospital since he was diagnosed in September, and it’s just a gift for the weekend. He was in his third semester of college, a major in kinesiology, when he was admitted to UCSF. The vinchristine, the same chemo that sometimes makes Tristan’s legs hurt in the middle of the night, has got Ivan using braces on his legs and walking with a walker. Again, if only we could all have the superhero powers of a three year-old. I’m very much hoping the best for Ivan.

The story goes on. As I was chatting with Ivan and his heavily-accented parents, Rita, a tiny, bent-over, elderly Mennonite from South Dakota, the mother of a woman about my age who is waiting in the hospital for a liver transplant, came into the kitchen. I had met her last night, and so I introduced her to Ivan and his family. The old lady, in her Mennonite cap and frock, sat down to chat…and commenced to engage Ivan’s mama in a fluent conversation in Spanish, during which it emerged that she had lived for some time in Mexico with her husband not long after they were married. After Ivan and his parents went to bed, Tristan lured Rita into playing blocks on the family room floor, which she did willingly and at some length while she and I chatted about transplants and about her now-grown other daughter who was born thirty-five or so years ago with an incompletely-closed spinal column. What an absolutely amazing collection of people — fighters, soldiers, warriors — we meet at this place. I’m humbled by these incredible folks.

Best wishes for a fabulous 2016!