To heal from hurt

Wednesday, June 15th

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We had a moment the other day in Costco, where I was shopping for camping supplies with the kids. In the checkout line, I realized I hadn’t picked up what I needed most: Ziplock bags for marinating kebab meat. The lovely woman working the cash register told me in an accent I didn’t recognize that she was new to the store and wasn’t sure where the bags were. She helpfully asked another employee to go grab a box. While we finished the checkout, she told me she had recently moved from Hawaii to the Bay Area, where her husband was being treated for cancer at UCSF. She paused for a moment, and then said, “He didn’t make it. I decided to stay in California.” “I’m sorry,” I said. I pointed to Tristan and told her that he, too, is a cancer patient at UCSF. She got down on her knees and hugged Tristan, who gave her back a great big hug. At this point she was crying, I was fighting back tears, and a long line of customers was wondering what the hell was going on. The cashier and I hugged and wished each other the best, and the kids and I headed for the car. The moment was so sweet and sad, and the stranger’s sympathy and affection for Tristan so sincere…I won’t forget it.

If that singular moment at Costco was powerful, we hit the mother lode of moments over Memorial Day weekend when we went as a family to Camp Okizu near Chico. Okizu is a non-profit that runs camps all summer for pediatric cancer patients and their families in Northern California. The word is Sioux and means “to heal from hurt”. On both mornings, hordes on fabulous volunteers and counselors, many of whom had attended the camp as pediatric cancer patients or siblings of patients, swept the children away to boat and fish and do a ropes course and make friendship bracelets. The parents were free to collapse under a tree with a book, or to join discussion groups. Gary and I did the latter. We learned the stories of roughly twenty other families and told our own. It was an enormously moving experience. We met parents who have two children with two, totally unrelated kinds of cancer. We met two moms whose husbands left them after the diagnosis. We met a mother with two adopted Latin American sons, the older of whom has just suffered a relapse of a particularly nasty brand of leukemia. The men and women we heard speak were all so strong. Lots of people were sobbing, but there wasn’t anyone who hadn’t pulled on their boots, waded right into the muck, and done what needed to be done for as long as it needed to be done, and pretty much all of them had done it, or were in the thick of doing it, with lots of hope and a good attitude.

I learned a new term: cancer mom. Turns out I’m a cancer mom. And I don’t think it’s going away. Once a cancer mom, always a cancer mom, even after Tristan is declared free and clear, I think. Until I heard the term, I had no idea that was a thing. Now I get it. Yep, it’s a thing.

The kids had a fantastic time. I was particularly happy that Tomas had fun. He has his reservations about the unknown, and he’s made it pretty clear that this whole leukemia thing hasn’t improved the quality of his life, so I was extra pleased when he pronounced the weekend “a ten” and declared himself ready to do a weeklong SIBS camp at Okizu next summer. Each summer, in addition to the family camps and several camps for the oncology kids themselves, Okizu runs a few camps for siblings of oncology patients. It may be the best thing Okizu does — it’s the siblings who really get the short end of the stick when a kid is diagnosed with cancer and needs a long treatment. (Just ask Tomas.) At the SIBS camp, the kids meet other siblings who’ve suffered all the same injustices, and they’re free to talk about them or to simply do another cannonball into the lake. So, Tomas will go for a week next summer, as may Phoebe if we can get her to eat more than white rice, Brussels sprouts, tempeh, and Nutella.

We coordinated doing the Okizu weekend with Noah and his family. Gary met them all for the first time, Phoebe and Maisy were attached at the hip the whole time, and Tristan and Noah were best buddies (to the extent of simultaneously falling asleep at the dinner table). We all danced together like crazy at a dance party on the final night. Even Tomas, who watched grinning from the sidelines, said he thought the party was really fun.

The last month was filled with other things, too — things that were simply fun and not so heavy with the sad and sweet.

I took Tristan with the kids’ school to watch a Coast Guard chopper land at the Kneeland Airport. The crew let the kids spend over an hour climbing all over the beautiful orange machine (I was worried they might have to rebuild it from the ground up before taking off again), and they answered every inane question the kids came up with. No, the helicopter will not explode if you touch the orange button, but please don’t touch it anyway. All three of my kids had a great time.

In addition, the kids and I (Gary was away for work) joined most of the school families in a short camping trip to Ruth Lake, where we ate gourmet kebabs, soaked up some sun, swam, fished, and enjoyed one family’s jet boat. With the exception of the part when, with Tristan and Phoebe’s “help”, my efforts to set up the tent with Tomas turned into a tangled disaster that caused me to throw my sunglasses into a patch of poison oak, it was a blast. (I now have poison oak on the end of my nose.) What a fabulous community we live in.

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Finally, at the Kneeland School’s annual Fun Run, the local volunteer fire department, who were in attendance to do “traffic” control, made Tristan their honorary member and presented him with a full set of gear matching theirs. Tristan was honored, indeed.

Today we returned from our fourth trip to UCSF since Tristan began Maintenance (therein beginning the second of 11 three-month cycles, for those of you who like numbers and schedules, i.e., my father). We stayed Monday at Family House, and we had dinner out with Kinari that night. Tuesday morning we went early to the OR, now just a short walk with the stroller (so nice!); socialized in the OR before our procedures with our good pals Susan and Noah, who were also on for a lumbar puncture just after ours; shifted over to the clinic for IV chemo; and again hung out there with Noah and his mom, who were also there for chemo. The only glitch of the day was when Tristan awoke in the OR with an IV in his forearm instead of in his hand. Expectations not met to a sufficient standard. We got through it. Last night we slept in Mill Valley at Noah’s house. I was repeatedly struck by how much Susan and I have in common and how happy I am to have become friends with her.

On a final note: Tristan now keeps his little red suitcase (a gift from Oma) packed at all times, ready for the next trip to SF. The contents included, at my last tally, his fireman slippers, fireman hat, fireman clothes, Captain America mask, two flashlights, a plastic warrior shield, and a toothbrush kit. Everything a three year-old might need to keep the world free of injustice, darkness, fire, and cavities.

2 thoughts on “To heal from hurt

  1. The fire department gave him his own little uniform and made him an honorary member? that is SO freaking wonderful. You guys really do have an amazing community. Thank you Toni for keeping us updated on the good the bad and the hilarious. Good luck with that poison oak….

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  2. Toni!!! I just wanted to say hi – and let you know how much I enjoy reading your stories, stories about your life, children, husband…your family. I watched you grow up in P-ton and here I am watching your 3 beautiful children grow up…only not in person! Glad Tristan is better each and every day..prayers are good to share, good for everyone…bless you ALL. Keeping YOU ALL in my prayers, hoping you stay in the right direction…Love to all, haven’t spoken to your parents in awhile…please give my love to everyone…xoxoxoxo – Donna

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