Out out damned spot!

Tuesday, January 12th

We’re home!

photo 3 (13)

Last Friday, the 8th, Tristan and I got up early and headed to the UCSF children’s hospital to have his blood counts checked. His blood was drawn by 8:30. With fingers crossed, we headed over to the Heme Onc floor to visit our friends from Mill Valley while we waited for the results. Our outpatient nurse had told me on Wednesday that if Friday’s labs showed enough of a rise in Tristan’s neutrophil count, we’d be able to head back north. If his ANC remained below 200, it was a no-go, far too dangerous to risk heading home. We had been away from home for three weeks, during which Tristan received his most intensive treatment so far. And, I hope, ever.

Noah, the boy a bit older than Tristan who recently suffered a relapse of his leukemia, is pretty miserable right now, stuck in the hospital, being hit hard with lots of chemotherapy and steroids, and feeling crummy. So, while his mom and I talked, our two bald boys squabbled over Noah’s toys. We tried desperately to get a picture of them together, a photo that someday, when they’re big, they can look at together while we all celebrate having gotten through this shit. The endeavor was a total failure, even with the promise of a puppy for each of them. Instead Noah’s mom and I have a series of blurry pictures of both boys wailing and swatting at each other. Oh well. Honestly, it was a bit funny — I mean, Tristan and Noah don’t have the slightest sense that they should be friends just because they both have leukemia — and I like Susan a ton, whether or not our sons will be buddies.

photo 1 (23)

In less than an hour, the lab results were posted on Tristan’s internet hospital chart. Soon after, our outpatient nurse Ilana called to say, “Go home!”. His platelets were up to an almost normal level at 132,000, his hemoglobin had stayed good at 10.1 since the New Years transfusion, and his neutrophils had bounced higher than expected, up to 390. Still neutropenic, but no longer very scary low.

As we left the hospital, we ran into Ilana. With a big smile, she said, “Yay, you’re at the end of DI [Delayed Intensification]!” Definitely something to be celebrating. She turned to Tristan and asked him, “So, what’s the first thing you’re going to do when you get home?!” The expected answer was something like, “Kiss my Daddy!” or “Play with my brother and sister!” Instead, without hesitation, unblinkingly, totally automatically, Tristan responded in a matter of fact tone, “Wash my hands.” Ilana and I were in stitches. Although, poor Tristan, where’s the joy in that response? (Every time we walk in our door, I ask Tomas, Phoebe, and Tristan, “Ok, what’s the first thing we’re gonna do?” and, well, you know the answer.) Ah well, if the worst that comes out of this is obsessive hand-washing, I’ll be thankful.

We arrived home Friday evening. Since then, I have had several opportunities to go running on our mountain, once with a group of my fabulous Kneeland friends, and also in town. We had a second, late Christmas with Gary’s family, which was loads of fun. Tristan and I have been to my parents’ down in town on several mornings, and I’ve been trying to excavate shelves and closets in our house to make room for last month’s mother lode of Christmas presents. How can we accumulate SO MUCH stuff? Best of all, over the last few days, Tristan and Phoebe have been playing like the best of friends. She is a terrific big sister, and wants to take good care of her little brother. They must be in one of those stages where their 2.5 year age difference is insignificant, and they can play together in a way that’s fun for both of them. Though not necessarily safe. Yesterday I intervened, slightly, after Phoebe tied a rope around her brother’s waist and was pulling him down a (snowless) slope on a sled. He does have platelets now, but…well, maybe we need to wait on the stunts.

We’re here through Sunday, and heading back to the city on Monday. Tuesday Tristan will begin a phase of treatment called Interim Maintenance 2, which is identical to the phase we did just before Delayed Intensification. IM 2 will involve five trips to the clinic for chemo over the next two months. And then…yes!…on March 15th Tristan will enter Maintenance, which will involve one trip per month for chemo over the next two and a half plus years. I know, it’s still daunting, but right now, after what we’ve been through since July, once a month seems like…a piece of cake.

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