First Maintenance, 10,000 miles

Friday, March 25th

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​We are officially in Maintenance! Tristan and I had a fantastic trip to San Francisco early this week. He barely skimmed by on his labs at St. Joe’s Monday morning, with an ANC of 800 (ANC 700 needed to go ahead with chemo). The cold heralded by the scary fever before our previous trip to the city had finally caught up with him, driving his neutrophil count down. But is was good enough to drive down for chemo on Tuesday. The trip Monday afternoon was smooth and we had a mellow evening at Family House, with a lot of Netflix in bed. Two things of note. First, I saw the man whose mother, forty years ago, cared first for him and then for his little sister when the siblings, beating all odds, both had leukemia. I masked my horror when I saw his shorn head, stitching all over it like a baseball, and, clearly, a apple-diameter divot missing from the front of his skull, and then I was so happy to hear him talking just fine and to see that he was full of just as much fire as he was the first time I met him, a couple of months ago. He explained to Tristan that the alphabet puzzle my son was doing was in error because the picture on the M piece was not, in fact, a monkey, but was instead a great ape. I also saw Ivan, the 19 year-old with Tristan’s form of leukemia,  whose mamma fed me enchiladas a few weeks ago. He looked great, much stronger, and I learned in a text message from him last night that he is finally in remission, will have a bone marrow transplant, and has had seven potential marrow donors identified. So good to have some good news!!!
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Tuesday morning we were at the OR early, with only the tiniest fuss from Tristan about being hungry and not being allowed to eat. The wait was easy, Tristan absorbed in a movie on a hospital iPad. My son bounced happily down the hallway to the surgery room, smiling and holding my hand. He breathed the anesthesia gas easily and, again, I left him there asleep without tears. That’s twice in a row! I must finally be toughening up. (I’ll be an armadillo by the end of this.) He had a spinal tap to check for leukemia cells in his cerebral spinal fluid (clean!) and intrathecal chemo.
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I met Susan, Noah’s mom, downstairs in the cafe while I dashed around filling a tray in preparation to feed Tristan after he awoke, and then casually snuck Susan back into the OR with me (she knows the drill, it was easy) so we could catch up by Tristan’s bedside while I was waiting for him to come out of the anesthesia. Noah’s blood counts had recovered enough to begin another 28-day block of treatment in the hospital, so they were back in again, this time in fighting moods, ready to “kick leukemia in the ass!” I was happy to hear her say that.

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

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


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


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

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

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

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

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

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

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

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

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

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Next appointment, April 19th!

 

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