Approaching sort-of-normal

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him down to the Bay Area from his home in Mendocino and taking him to his doctors’ appointments, because his license was revoked after he had a seizure.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!

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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.

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