Chocolate pudding & chemo schwag

​Tuesday, July 10, 2018

I am sitting next to Tristan’s bed in OR Recovery, waiting for him to wake up from HIS LAST ANESTHESIA. !!!. His response to learning this OR visit is the last one: a genuinely disappointed “Awwwww. I don’t get to breathe the gas again??” We’ve got to keep this kid away from recreational drugs…

This is our third to last trip down for chemo, and I want to make each of the last ones special. This one’s been fun. We left home on Sunday and had an easy drive down to our friends, the Maylands, in Redwood Valley, just north of Ukiah. There we had a delicious dinner, took the dogs for a walk in the vineyards, and spent the night.

In the morning, Tristan and I continued down to UCSF, where we had an afternoon appointment with a pulmonologist. After so many coughs and lung infections, it was time to see if Tristan might be asthmatic. He was a total imp in the appointment, repeatedly raising the exam table to heights fit for Andre the Giant, clambering up on it and down from it, holding his breath when the doctor asked him to breathe deeply, and goofing off with a set of nose plugs he had been allowed to keep after a breathing test. Fortunately, the pulmonologist seemed to think he was charming, or she pretended expertly. She concluded that Tristan has likely got some mild asthma, but that his lung capacity and function are so phenomenal that he should probably take up free diving. I think I’m not going to worry about asthma.

When we were done with the pulmonologist, we checked into Family House, cashed in Tristan’s prize coupon for a Minecraft Lego at the “toy shop”, and Ubered over to Chinatown. There, Tristan shopped for gifts for his brother and sister, carefully examining a hundred million colorful objects jammed side by side on shelf above shelf in seven different shops. I practiced patience. After great deliberation, he selected glass cubes engraved with magical creatures, a dragon for Tomas and unicorns for Phoebe. He settled on a a small carved wooden cobra for himself.

After Tristan finished his shopping, he was ready for dinner. We set out to find roast duck, his favorite. We ate in a restaurant grotty enough to make it feel authentic. That, and the surprised looks of the staff when we entered and asked for a table. Tristan wasn’t thrilled at the flavor of this particular duck, but he did eat a bunch of it, with three orders of white rice on the side. We Ubered back to Family House and Tristan fell asleep in the traffic while I talked over Brazil’s World Cup tragedy with our Brazilian driver, who was crushed. I learned that he’s a civil engineer in Goias, here to improve his conversational English via Uber. Brilliant, I thought.

Our final OR adventure went smoothly, even the waking-up bit. We’ve got it down to a science: as soon as Tristan begins to stir, I talk softly to him so he knows I’m there, and I put my hand on him, and I mention the chocolate pudding I have waiting for him. When he’s awake enough to register the presence of chocolate pudding and to ask for it, I wait for the nod from the nurse and then begin to spoon it into his mouth. Waalah! A smooth return from Anesthesialand. Works every time.

[I might write a manual on all this – Mom Tricks for Getting Your Kid Through Chemo AND Having Gobs of Fun While You’re At It!!! This masterpiece will include the following chapters:

-the pudding trick for helping your kid make a smooth return from the unconscious

-how best to do road trips with a neutropenic child (e.g., planning for nutrilicious drive-through meals at MacDonald’s that require zero human contact, and how to accommodate roadside potty stops – pee AND poo, either one! – that don’t involve filthy bathrooms)

-chemo schwag (free shit, for those of you new to this word that is CLEARLY of Germanic origin) and what to do with the piles of it that your children will quickly accumulate after one of them is diagnosed with cancer

-recipes and cooking recommendations for your steroidal child, perhaps entitled “Just cook the whole fucking chicken”.

This is a most definitely a bestseller in the making…]

We’re home right now. I wrote that last bit in the car while waiting for the 101 to be cleared just south of Legget, where a logging truck had flipped on its back and spilled 30 huge trees across the only road directly connecting NorCal to the Bay Area. The driver had to be airlifted out by chopper. I saw the cab of the truck and wondered how there was anything left to airlift. Come to think of it, Humboldt County is really not that different from southwestern Borneo, between the road conditions and the medical care… Now Phoebe and Tristan, happily reunited, are upstairs playing Lego. Tomas is on the couch being an almost-teenager. I’m stealing a few minutes to add to this.

Following the OR, Tristan and I headed straight for the infusion clinic, where it was smooth sailing because we arrived with an IV hanging from his arm. No need for numbing and heat and putting in an needle. He ate a cuppa soup (edible chemo schwag from the OR desk lady who wanted to give us a special farewell package) while getting his poison and watching Rescue Bots on my computer. Happy as a clam. There were lots of high fives from the nurses and our social worker on having just accomplished the last anesthesia. Our outpatient nurse, who is fabulous and also extremely chipper about chemotherapy, cheerfully calculated with me that Tristan has had a total of 22 general anesthesias, give or take a couple for a skipped one when he had a terrible cough and an extra one or two or three for port removal (post maniacal port-access tantrums), inguinal hernia repair (post false testicular cancer diagnosis), and emergency orthopedic surgery (post having a boulder dropped on his left ring finger). Always a good time. I think we should be done with anesthesia forever. Tristan has had enough anesthesias for 22 people, at least.

Chemo fun aside, Tomas made the All Stars baseball team for the third year in a row. This year’s team ranges in age from 11 to 13, which, as you might imagine, means that the team is developmentally rather varied. One boy on the team, nicknamed “Manchild”, has a thick beard and a low voice and has hit so many balls into the redwoods behind the field that the loss of balls is having a negative financial impact on the team. At the other end of the spectrum are a few boys who are not much taller and meatier than Tristan. They are all fun to watch, a bit of a circus. Last week the team won the local tournament without contest, and next week they are on to Sectionals in Redding. All good fun. Who wouldn’t want to go watch ball where it’s 120 degrees out? Gary and I will split the week there, and I’m looking forward to my three days with Tomas, Manchild, and an assortment of twerps of different shapes and sizes.

And some fantastic news: it looks as though Noah’s second round of Car-T immunotherapy might have worked. I recently heard the good news from Susan, who is on the East Coast with the kids and just had a follow-up at the Children’s Hospital in Philly. We stayed with them in Marin on our June trip to UCSF. They boys had a good time together, and Noah was looking great. Very much hoping the news stays good.

Other upcoming fun includes several visits from good friends, one of whom is bringing a filly for Phoebe! More later…

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