Last month we heard that Alexandra’s drug trial at Stanford wasn’t going well. A year into her cancer diagnosis she was running out of options. Vanessa and Grant needed an extra hand to bring Alexandra back to Austin. That Friday evening I stepped out of my Uber in California and was greeted by Grant. I didn’t know what to expect. How do you help two people drive their dying child back home?
Early next morning Grant and I drove into town and returned with a big ass RV. The plan was to keep Alexandra as comfortable as possible. I made up the bed for her where the dining table drops down in the main cabin and padded it with pillows. Vanessa brought in armloads of Alexandra’s favorite soft toys including George, the three foot tall giraffe. It took hours to pack the RV – a wheelchair, a walker, medical equipment, special food, and then everything else from them living in California for months. Grant carried Alexandra into the RV and we got on the road. Over the next five days we drove to Austin. We stopped at friends’ homes along the way who greeted Alexandra with welcoming hugs and love and carefully prepared meals and then bade a cheerful good bye next morning, holding back tears.
Alexandra started strong and alert and ended the trip tired and ready to be in her own bed in her own home. She made it feel like just another road trip as if it was the most normal thing in the world. Along the way I walked Keisha’s dog on Venice Beach, hiked up the red rock bluff next to Camelback Mountain in Phoenix with Nic, had a cup of the best coffee in Las Cruces made by Bernie in his kitchen, drank more of Trapper’s bourbon in Sonora than was good for me, and was made to feel at home with love and affection that overflowed from Grant and Vanessa. When faced with darkness and pain, they radiated light and hope and made it a trip of a lifetime.
Grant and I took turns driving. The RV was comfortable and spacious. Though it felt like a giant cardboard box on an F-450 chassis, you could coax it up to about 75 mph. Vanessa sat across from Alexandra and chatted away with her and kept us together.
I vividly remember the day Grant called many years ago. They had just found out that the adoption was going to go through. Grant was at a boat show in Annapolis. He called and said “I’m going to be a Daddy”. He was so happy. When they got Alexandra, Grant took a picture of her laying next to two iPhones end to end. She was about that long. That was 13 years ago. As Alexandra grew up I’d hear her voice on my phone occasionally. If Grant called and it rolled over to message, Grant would ask her to say “pick up the phone, poopyhead!”.
While we were driving across the southwest, back at home Evan was having a busy weekend. He had his first school dance Friday night. Evan went black tie and looked very dapper. I didn’t get the details, but I think the 6th graders treated it like an extended recess and didn’t really do the romantic dance thing. He also had two soccer matches (one on a freezing early morning in San Antonio), a birthday party, and an airsoft party (where you shoot airsoft pellets at each other instead of paintballs). Vivian escaped the weekend madness with a sleepover at Julia’s. Jo and I have worked hard to be fungible parents, and we replace each other pretty well.
So Grant and Vanessa are divorced. There were stretches before Alexandra’s diagnosis when things between them weren’t pretty. That didn’t matter now. The four of us were a team. We were a good team. We engaged in banal everyday things, but the air around us was charged with urgency. We were acutely aware of life. I had this weird feeling that if we kept driving everything would be alright. Don’t stop. Just keep on going. In this little bubble we are okay.
But increasingly Alexandra was hardly able to eat. She was getting weaker, communicated less, and was frustrated that she couldn’t eat. Still, her eyes were sharp and she hung in there with amazing courage and grace.
The girl at whose home Vivian slept over on Saturday is Julia. Julia’s mother is like a second mother to Alexandra and is a very close friend of Vanessa’s. I was in this RV because Tavia had called me. In another small world moment, it turns out that Julia’s grandfather was a professor at Jo’s alma mater, Washington College. But Vivian and Julia, without knowing any of this, found each other at high school and became fast friends.
Tavia had offered to fly to El Paso and relieve me and drive the last third. I would fly home back to my family and work. But I couldn’t do that. I selfishly felt I had to keep the bubble intact as long as I could. So we drove on through El Paso and west Texas and that night we stayed at Tavia’s brother’s in Sonora. It was our last night on the road. The next morning we drove in to Austin. Jo and Tavia met us at Vanessa’s. Grant carried Alexandra up and Vanessa made her comfortable. I set George the giraffe up in his place next to her. I kissed Alexandra on top of her head and Jo and I drove home just in time for my Thursday 1pm zoom call. The trip was over like that.
ps. Friday was a blur of work and laundry. On Saturday, right after Evan’s soccer match, Vivian and I got dropped off at the airport to board a flight to San Francisco. It was the start of her spring break and we had planned to spend a few days there while Jo stayed with Evan who still had a week of school to go before his break.
When we landed in California there was a message on my phone from Vanessa. It simply said that there was one more star in the sky. I read it over and over a dozen times till the airplane finally stopped. Vivian and I walked down the ramp into the cool California afternoon.
Vivian and Alexandra knew each other tangentially. They spent a week at a time together in sailboats in the British Virgin islands and in French Polynesia when they were little. As they grew up they didn’t hang out. Then they both ended up at the same school for a couple of years. Vivian was two grades older. I’d see Alexandra when I’d come to pick Vivian up and she would shyly wave back. Since Alexandra’s cancer diagnosis a year ago Vivian was acutely aware of Alexandra. When she had to pick a topic for a biology research paper last Fall, she chose to write about DIPG, the kind of cancer that Alexandra had.
I steered Vivian to an empty corner of the airport and broke the news. We stood there for a long time in our masks, tightly holding on to each other, tears streaming down our faces.
We knew what was coming for a year, but we had still hoped. We are dying from the moment we are born. But the way we live our lives gives it meaning. Without that, there is only absurdity. Alexandra’s life burned short and bright. It is hard to believe that she is gone.
Notes from Dad 