Chemo & cranes, a winning combo

Wednesday, January 6th

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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!

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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.

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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.

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3 thoughts on “Chemo & cranes, a winning combo

  1. This is such a moving post, Toni. Thanks. What a beautiful gesture for this woman to have made 1000 cranes for a customer’s child. What lives people lead. It’s a bit overwhelming – both the kindness of peoples’ hearts and the pathos of these hidden lives.
    Love and strength to Tristan and all of you!

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  2. Toni – My gosh – I can’t believe what you’ve all been thru….it’s Donna – Donna your very old babysitter from Moore Street in Princeton! Yes! It’s me!!! Your Mom gave me your blog info, and I just had to respond. Your little one has been thru soooo much, I had no idea he was so sick. My heart goes out to Tristin and all he’s had to ordeal…Your blog is so inspiring to read….I wish I was there to help you or do something for all of you. My prayers go out to all of you – I hope 2016 is much brighter for you – Love to all, Donna…xoxoxox

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  3. Thank you for sharing and being so open! It is beautiful to read your writing and hear about the life-changing experiences you and your family are having. I can’t imagine it’s easy, but you continually manage to illuminate with positive, albeit heavy, glimpses of what you all are going through. Miss you A LOT, but so glad that you are surrounded by such incredible people! xoxo

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