Raw

Monday, July 18th
image

Today was the anniversary of Tristan’s leukemia diagnosis. A year ago today, I took Tristan, Phoebe, and Tomas to a kids’ gym and Tristan felt too awful to walk or climb on a balance beam or swing from a rope. Then, as I drove the kids to Tomas’ baseball practice, the doctor called with the results of the previous day’s blood tests. Straight to the the ER, he urged, and we never got to baseball practice. We spent the day in the ER, having another blood test, seeing family, waiting, and having no idea what was coming. That night Tristan and I were med-evaced to UCSF.

Friends have asked me how I feel today, a year in. It all feels very raw, and I am remembering details of that day, and of the day before, when I took the kids to lunch at a sushi place across the street from the doctor’s office to wait for the lab to re-open after lunch. After mochi ice cream, Tristan’s blood was drawn. On that day, his platelet count was about three orders of magnitude less than it should have been, his hemoglobin terribly low. Right now I’m still there, with my kids in the sushi place, with Tristan in my lap in the blood draw chair, pulling over the car to answer the phone call of the doctor. I think tomorrow it’ll feel less raw. Tomorrow I’ll reflect on the full year and be happy that it’s over. Happy that, with the exception of the scar on his chest, Tristan looks and behaves exactly like any almost-four year-old should. But today it hurts.

Tristan and I made another trip to UCSF last week. This time, he did not get his chemo. He’s been hoarse many times since he began treatment a year ago, and in late June he had a five-day bout of laryngitis. Vinchristine, the IV chemo he gets every month, can cause paralysis of certain tissues, including the vocal chords. Tristan’s doctors convened, and decided to skip the vinchristine this month. If he’s notably less hoarse this month, they will consider a dosage reduction for future chemos. When I asked the doctor if skipping this month’s vinchristine might be cause for worry, he assured me that it was no big deal. He went on to say that he also was not concerned if we do, indeed, reduce Tristan’s dose in the future. In two years, he said, all of the protocols will change and the doses for patients in Tristan’s risk category will be lower. On one hand, I thought, Oh good. On the other hand, WTF??!!! So you’re telling me that we’re regularly giving my son greater doses of poison than are actually needed to do the job?! Ugh. That does NOT make me feel good.

Other than this upset, the whole trip was smooth and easy. We stayed with friends in Ukiah on Monday night and had a lovely visit, continued the trip down to the city on Tuesday morning, met up with Susan and Noah in between their morning clinic visit and our early afternoon one, and then were in and out of the clinic fairly quickly. Tristan and I went on to Family House, where we had a visit from sweet Bianca, the teenage girl we had met months ago who had had a double lung transplant. She came on the bus with her mama from the Mission, where they live, and she brought gifts for Tristan, including a Paw Patrol shirt that made him SO happy. Over tea in a sunlit Family House living room, Bianca told us that, for the first time in 11 years, she will be able to go to school next year. Not full time, as the doctors want to minimize her risk of exposure to cooties, but, for her upcoming senior year, she can go for a couple of hours three days a week. “I just want to go to math class,” she said. “I LOVE math, and I want to be there for it.” She also told me that the whole family will go to Mexico in the fall for her cousin’s quinceanera. What an amazing kid. She’s kind and friendly and smart and so totally…un-fucked up. How that could be, after years of illness, total isolation from friends and normal kid stuff, and just about the most major surgery I could ever imagine…I dunno. She’s just an incredible person.

I’m finding that I actually miss all my special time alone with Tristan in San Francisco, and that I look forward to these monthly trips with him. How lucky I am to have these times with Tristan.

The last month has been VERY full. School ended, summer vacation began, and the five of us embarked on a real honest-to-god family vacation. When we described the trip to good friends after returning, their response was, “Are you fucking insane?” Yep, I guess so! We rented a 25-foot RV from Cruise America and embarked on a ten-day, 3,000 mile odyssey across northern California, Nevada, Utah, and Colorado. On the eastward trip, we visited Lassen, Great Basin, Capitol Reef, and Arches National Parks. We stayed in RV parks in Lassen itself, and in the towns of Ely, Torrey, and Moab. In Colorado, we visited my good friend Tanya for three nights. There, we enjoyed being out of the RV and on the high desert. Tanya took me on a wonderful horseback ride in the foothills of the Rockies, Phoebe fed peppermints to a range filly that Tanya is fostering, Tomas threw a baseball in the desert scrub with Gary and Tanya’s husband Kevin, and Tristan made mischief of one kind and another. It was heaven. On our westward return via Wyoming, we stayed in Green River and visited the Flaming River Gorge, spent the second night in Winnemucca, Nevada (which appears to be a burgeoning retirement community in the middle of nowhere), and slept our final night again in Lassen.

I learned many things on this trip, including the difference between a pull-in and a pull-through RV spot and the meaning of full hook-ups. I learned that RVs are fun, and that kids ADORE RV parks, and that KOA bathrooms are spotlessly clean. I learned that RV parks are tidy places and that the people who stay in them are courteous and polite; it was slightly painful to recognize that my kids were the loudest kids in the campgrounds at night, repeatedly violating quiet hours rules, and that we were the only ones with coolers and towels and shoes sprinkled throughout the space around our “rig”, rather than stowed neatly away. I learned that eight hours is twice as long as kids can be happy in the RV in a given day. (Ooops, next time we’ll have a closer target destination.) I learned that we should have turned left, instead of right, leaving Hanksville, and that if it starts looking like Arizona it probably is close to Arizona…but the 150-mile accidental detour through the Glen Canyon and to the south of Canyonlands National Park was the most spectacular landscape I’ve ever seen.

The trip ended with a fabulous twist, a get-out-of-jail-free-card. Just west of Redding, the check engine light on the RV dashboard blipped on. “I think we may have lost a cylinder,” said Gary. “But don’t worry, we’ve got seven more!” We consulted the manual, read that Cruise America wanted us to pull over “as soon as possible to call Traveler’s Assistance”, and decided that “as soon as possible” was open to interpretation. Getting any kind of help would take ages on the 299…so we finished the last hour and a half of driving slowly and carefully and without incident. After we unloaded the RV and I had cleaned it, I called Traveler’s Assistance. No problem, they said. If you are home and safe, we’ll send a tow truck. So, the next morning, instead of having to get up at four to return the rig to San Francisco before the 11am deadline, Gary slept in and Cruise America organized a local towing company to pick it up. The kids all waved goodbye to the RV from the upstairs window, sad to see it go.
image
It was a fabulous time. My favorite bits were Capitol Reef, with its red rocks and green orchards, and the runs I took in Lassen to a crater lake, in Colorado in the high desert, and through Winnemucca for a tour of the desert town. Gary loved the unintentional detour through the Glen Canyon. We both loved the US50, the Loneliest Road in America, and the way each basin and range unfolded before us in a different palate of colors with a different texture, some green chenille, some fuzzy muted yellows, others smooth reds and oranges. Tomas’ favorite thing was having a bathroom in our vehicle. Phoebe and Tristan’s most liked the anti-bear food lockers in Lassen National Park.

The lowpoint was in the Flaming River Gorge, where we took a long scenic drive to see wild horses (of which only two deigned to show themselves). The kids were being abominable. So much so that I announced I was going to jump ship as soon as we hit the I-80. “I’m not abandoning you permanently,” I said. “I’ll see you back home. I just can’t be in this RV with you guys any more if you’re going to fight like this.” I counted the 12 dollars in my wallet, handed Gary an extra pair of sunglasses that he could use, and tied a sweatshirt around my waist. “Alright Mommy, I guess it’s got to be this way.” Gary played along. It was 20 miles to the 80, during which there was a rapid turnaround in behavior. On the final three days of the trip, sibling rivalry was dramatically reduced, Gary and I were able to relax in the cab of the RV, and I was spared from having to figure out how to get home on $12.

Today Gary and Tomas are in Susanville, where Tomas in is day three of an All Stars baseball tournament. He was drafted onto the team after the end of the Little League season. When the coaches excitedly told me of this honor and then proceeded to describe the level of commitment required of us for the rest of the summer, my response was lukewarm. The coaches’ jaws dropped. For the first time in Little League history, a mom was not OVERJOYED that her son had been put on the All Stars. What the hell is wrong with this woman? they thought. But in the end, the coaches and I managed to compromise, and Tomas played throughout the first, local tournament, which his team won, then went on our vacation, and subsequently rejoined the team before the regional tournament in Susanville. If the team makes it to the state tournament, I may have to embark on another unheard of negotiation with Tomas’ coaches to maintain the security of other summer plans ahead. The men will be doubly baffled. There’s that crazy mom again, that one with NO respect for America’s favorite game…

image

It’s late, and I’m going to go climb in bed for a bit with Tristan. I’m going to hold him close, and think one more time about how I climbed into his hospital crib in the PICU a year ago tonight to snuggle him close when we were both so scared, and then I’m going to try to put that aside for a while. I’m thinking that tomorrow all this won’t feel so raw anymore.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s