Sunday: Day 9

Hi everyone,

We pulled the trigger and Paquette has started the admissions process. It should take a few days to get a bed on the ward at UCLA, and then off we go. This will be the hematology/oncology ward (how fun does that sound?). We’re working on getting an idea of what the week will be like. It’s an isolation ward, so this won’t be as loosy-goosy as when we were at St. Johns. I’ll be in touch with local folks about visitation policies.

She’ll go in tomorrow for a blood test. Very curious to see where her levels are. My guess is she’s getting pretty low.

We got this email from a friend who found out we were being treated by The Guy:

Some years ago I was a volunteer on an Institutional Review Board at UCLA. As you may know, it’s the board of approximately 20 doctors and 3 lay people who review every research grant that will involve human subjects. Ron Paquette was also on the board. Of all the doctors in the room, he was the smartest. Even when talking about science outside his specific area of expertise, he was the shining star. I’m glad to know that your family is in his care. Even to my untutored eyes, he was something special.

Many of you have asked about Theo and how he’s doing. I haven’t written about it because, it’s almost too painful. All you want to do in life is keep your child safe physically and emotionally. We wish we could shield him from this, but we can’t. He’s been truly amazing, which we would have expected. But it’s hard to see him worried and sad. His teachers reported that the first two days after Lisa was in the hospital Theo was particularly withdrawn, but seems to be coming around. And thank god he’s such an easy kid.

We are so grateful to our amazing friends, old and new, for taking Theo for play dates and overnights. For taking him to school and picking him up. (I’ll be sending out an email later to try to plan the week!) And Wildwood has proved to be the community we’d hoped for in moving there. They have stepped up in every way.

Theo’s too smart to put anything past him, not that I think we would have tried, but our policy has definitely been to explain everything to him in clear and simple ways, and let him ask questions. One of his first a week ago was, “Is there such a thing as blood cancer?” Uh yeah, no point in trying to keep shit from him.

In general, he’s so afraid of hurting Lisa he doesn’t really want to touch her at all, and that’s hard. He knows he could get her sick, and that bumping her could cause a bleed. And that’s a heavy thing to think about with your Mom. He’s very touchy with me, and we’re trying to make sure I’m there as much as possible for him.

We tell him what’s going on, and in general he says he doesn’t have questions… until he and I are alone. I think he doesn’t want to upset his Mom.

This morning I took Theo and Rudy for a hike (figured I could knock three family member needs out at once and that’s how i’m gonna have to roll right now). I asked Theo if he had any questions. He said no… took a few more steps… and then said, “Unless you want to explain this whole thing to me again?” So we spent the next 40 minutes talking about red blood cells, and white blood cells, platelets and genetics (he and Lisa don’t share DNA). We discussed autoimmune diseases, and immunosuppression . We talked through both sets of treatments, both the idea of the science behind what they were trying to do, and the realities of what it would be like for Lisa. It was very science-y which is a comfort zone for him.

One thing we’ve decided is that, once Lisa is ready to go wider with this news (don’t worry, we know it’s spreading like wildfire) that Theo will run the Bone Marrow Registry drive that we plan to do. We’ll keep a list of everyone we get to sign up and see how many we can do. We’re hoping we can do a drive at school as well. Think this will help him feel empowered and involved.

So, that’s what I’ve got on Theo. He has been the most mothered of kids – and he and Lisa have been inseparable. This is a huge difference in his day to day. And he’s incredibly aware of both what’s said, and what’s not said. He sees me hanging around chatting with folks at school, and people hugging me, and he knows shit-be-up! But so be it. He’s resilient.

We’d talked in the last few months about Theo being a perfect kid to send to camp so he can get away from his Moms and face a little roughness in life. Maybe we won’t need to send him after all.

Thanks everyone-
Chris

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