This is one of those posts I’ve been composing in my head for the better part of 6 ½ years, always sort of thinking I’d never really have to. But, here we are.

Let’s not beat around the bush. Preston’s cancer is no longer responding to treatment, and so we’ve made the difficult (but correct) decision to move to hospice care. The cancer has invaded nearly every part of his spine and he is very uncomfortable. He’s managing the pain with medication, and is still very alert and Conor and I are enjoying as much time with him as possible.

Hospice means a lot of things, but the best way I’ve had it articulated was in a conversation with the leader of Conor’s support group. She said, “This means our hope is changing, and our goals are shifting. We’re not focused on getting him better. Now our goal is to make sure he’s as comfortable as possible and able to enjoy whatever amount of time we have left.”

You’ve got questions probably. Here’s what we know:

1. He’s at home for now. As long as his pain is managed with pills, he can be home. The point at which IV medication is required, he’ll go to the Transitions Hospice house in Raleigh.
2. Conor is doing OK. He is fully read in. It was the most difficult conversation I have ever had. When we told him the scans had not gone well he said, “We’ll make the most of what time we have left.” It breaks my heart that he really doesn’t know life before Preston’s cancer. And yet I’m very grateful that he has built the skills to articulate his feelings, talk to therapists, ask for what he needs, and appreciate time when we’ve got it. What a remarkable kid.
3. I’m also OK. I’m leaning heavily on Preston’s parents and the Mann clan. We’re still very much in an administrative piece of this – getting nurses and social workers in, trying to get the right equipment, making sure the we have enough meds. When it slows down, I suspect my needs will look different. Work is a respite because it is a place to put my overly-active brain. My board and colleagues are incredibly supportive. I listen to a lot of predictable romance novels. Luna and I go on long walks. Preston and I are watching movies and TV we’ve seen before. I’m trying to remember to eat.
4. We don’t have any idea about how long.
5. No, we’re not asking for additional opinions or seeking alternative/additional treatments. Please don’t suggest them.
6. We’re not ready for visitors, and may not be. Thanks for understanding.

We’ve had a lot of requests about how to help. Thank you. Here’s the bit – it’s all pretty overwhelming right now. And I don’t even really know what we need. But, here are some thoughts:

• We’d love to capture your well-wishes, memories, reflections. But *PLEASE* don’t send them to our regular emails or phones. We need to engage with the content when we’re in the right headspace for it. The very best email is pscwillcox (at) gmail (dot) com. If you have a fun Preston story, please send it there. If you have pictures or videos, please send them there. If you want to send a resource, idea, or good wish, please use that email. If you have a specific note for one of us, feel free to put our name in the subject line.
• Please don’t send anything to our house. We do not need gifts or flowers. Cards are OK. But they better not be too sappy.
• If you’d like to contribute to our “Joy Fund” a friend set up for us, you’re welcome to do that. We’re using this to provide additional opportunities for fun, particularly for Conor. Games, movie rentals, craft kits, other experiences. No pressure – this is not a fundraising ask. We’re OK. But here’s the link: https://braid.co/p/v3f9x0mo
• Door Dash/Uber Eats/ Grub hub e-gift cards are all good, too.
• We’re not doing a meal train. It’s too much to coordinate. We’ve got several folks who are making sure we’re fully nourished.

I’ll try to keep this space updated. I promise to ask if we need anything.

It sucks mightily. We’re scared and anxious. We’re trying to balance “SAVOR EVERY MOMENT” with “DO THE THINGS” with “THIS MAKES ME FEEL SLIGHTLY BETTER” and it’s different every second of every day.

OK, that’s all that I have the energy for right now. More soon.

With love,

Sarah