You should probably read the update first.

When Preston was diagnosed 4+ years ago, Conor was only 3 1/2. He really didn’t understand what was going on. We read a couple of books, (there are no good books about dads with cancer. But “Goodbye Cancer Garden” is a very good one about a mom) and I talked to a couple of child-life specialists to have some tools in the toolkit.

At first, what he experienced was that he was getting to watch more cartoons than normal, spent more time with his grandparents, and sometimes his dad didn’t feel very well and couldn’t pick him up.

When they’re really little, the important points are:

• Dad didn’t do anything to cause this for himself, it’s just bad luck
• You can’t catch cancer from Dad
• We’ve got to be extra careful about things like washing hands… but
• We don’t want to get too carried away being afraid of germs, either
• Dad still loves you and wants to play with you very much and he will as much as he can when he feels better

We also never made false promises. Because that is just super-dangerous territory. He never asked outright if Preston was going to die – honestly, I don’t think he had made the connection between death and cancer because he’d never had a reason to.

OH and an important note that I’m SO GRATEFUL a nurse told me – 4-5 year olds get OBSESSED with death. It’s developmental. Doesn’t have a dern thing to do with cancer. Don’t panic. It’s a phase.

When the cancer came back in, was that 2018? (It’s sort of running together) Conor was a little more aware, but still not totally. Chemo is not as chaotic as surgery. We just settled into a routine. We celebrated when P finally felt well enough to join us for dinner on chemo weeks because it meant he started to feel better.

All along, I’ve had this ivy analogy going.

Cancer is sorta like the ivy in our (former) backyard. It’s pretty harmless on its own, but it can climb up and over a plant or tree and make that tree sick. And so, the medicine is trying to keep that Ivy from growing on the important parts in dad’s body, and the surgery is pulling it straight out. The chemo is like weed killer – it’s getting the ivy, but it might also make some of the plants around it sick for a while.

It has served us well. Tangible in way that cancer really isn’t.

As he’s aged, he has gotten very into science and understanding the “how” and “why.” But this analogy is still holding for us:

Surgery = pulling the ivy up by the root and pulling it off the tree. It’s a lot of work, and sometimes you can’t get every piece off the tree.

Radiation = pouring weedkiller straight on the root. You don’t have to pull it out, but the plant can’t grow anymore.

Chemo = spraying the whole backyard with ivy-killer. It mostly just gets the ivy, but some of the other plants might suffer in the meantime. But you’re also catching those few plants that are hidden underneath something else so they can’t start growing up a tree.

Since he’s older, we keep the analogy humming along, but we also tell him everything else. All the details he needs or wants. Sometimes he asks really good questions, and we don’t hide the truth from him. We try to make him feel like a part of the process all along so he doesn’t get surprised by anything. We warn him that things might get a little crazy for a while. But he knows that we’re a team and that Preston’s doctors are the best in the world and that we trust them to make good decisions.

It’s not always easy, but he’s been living through this with us for more than half his life. I don’t think he’s particularly angry about being dealt this hand because it’s the only one he knows. (which, hoo boy, that’s a difficult sentence to write out.)

I’ll end this with the advice I always give people when they ask. Kids are hella smart and wicked perceptive. Don’t try to sugar-coat anything and definitely don’t try to hide anything. Because they know what’s going on. Keep an eye out for anything that’s particularly troubling (obsessions with germs/health, unusual sadness or anger, other mental health cues) but remember that mostly it’s just kids experiencing and processing and some of it has nothing to do with a diagnosis. Some of it’s just 7-year-old hormones. (THAT IS TOTALLY A THING.)

Make them the center of attention when you can, but gently remind them that it can’t always be that way and that’s OK.

And for real, though – if you, or a friend of yours or whoever – ever wants to reach out to me to talk about this kind of stuff – especially when it’s new – please do. I felt really alone in the beginning because no one had really been through this that I knew.

It’s not a bother, I promise!

And finally – processing trauma is real and it is hard and we’re literally all going through it right now. While I say, “don’t freak out” about some phases, you know your kid the best and if you have even an inkling that they need some extra support, go get it. Cornucopia House in Durham is a terrific resource and other cancer centers have programs and access if you need it.

I’ll add other things if I think of them, but I’m like, super hungry. And I bought an ice cream cake. So we might have that for supper.

In cancer-land, not having to give any updates is a magical luxury. In the early days, there is so much chaos. So much change. So much to support.

And then, if you’re lucky, you settle into a routine. Chemo. Scans. Rinse. Repeat.

You might even start to make plans that go outside the 3 month scan window!

And so you don’t really need to say much. You can pop in every so often with a “I stink at updating this!” (side note, I’ve started dozens of journals over the years. And if I ever make more than one entry it usually starts with, ‘Well, it’s been a while since I wrote…’, so really, this is very on par for me.)

Anyways. With that lead in, you must be super pumped about an update.

P’s last scan revealed a new lesion in his liver. We had hoped it could be something other than cancer, but alas, the cancer has a new spot in addition to the “numerous” ones from his lungs. His lungs have been stable for a long time (that means that they don’t grow more than 20% between scans), so the many dozens of rounds of chemo (are we up to 60? I’ve completely lost track) are mostly doing their jobs.

But this new spot means we’ve got to shift back into gear. More doctors appointments. More uncertainty. More scans.

Here’s what we know so far:

• Since it’s cancer, and the chemo didn’t stop it, P will probably have some change in chemo cocktail. But we don’t know those details yet.
• They’re going to tackle this one lesion in his liver since the lungs are just sorta hanging out. Dr. Boles called it “Whack-a-mole” and I haven’t decided how I feel about that analogy yet.
• P had a consult today with Dr. Wang at UNC (I’ve said this before but WE ARE SO FORTUNATE to have access to some of the best doctors in the WHOLE WORLD in our back yard.) Dr. Wang is, in a word, a complete badass. He’s also super nice.
• His specialty is Cyber Knife. Which was obviously named by a 7-year-old who watches too much Power Rangers. It’s not a knife at all – but rather a couple hundred super focused x-ray beams. They use gold seeds that they’ll inject in to P to mark the spot. Those beams will melt the cancer and make it so it can’t replicate. I mean it’s just all so damn cool.
• P will go for a couple of setup appointments and then have the radiation treatment 3 times over the course of the week.

How do we feel about all this? I mean, we wish there wasn’t a spot to tackle. But since there is, we’re glad Cyber Knife is an option (100% the blue ranger invented this weapon but the red ranger named it) and I’m glad he doesn’t have to do a hospital stay. This radiation is incredibly precise, so it leaves it as an option should we have to pop another coin in the whack-a-mole machine down the line. (Maybe it’s more like Down a Clown?)

So we’re piling some more on a world that’s already got A LOT. Personally, I’m feeling a little scattered and my brain is very full. (this is my way of saying, “If I don’t text you back, it probably means I think I responded but didn’t and now it’s gone from my brain. Try again.”)

We are masters at compartmentalizing, and have a wonderful support structure. We don’t really need anything right now, and some of the things that would be really nice like walks or kid adventures or distractions are off the table because, you know, pandemic.

Having a big kid helps a lot – Conor even cooks for us sometimes and can 100% be distracted by screens when needed. (I’m going to do another post in a second about how we’re talking with Conor about all of this now that he’s older in case you ever find it useful.)

So, just maybe send up a prayer or good thought or whatever works for you and maybe start learning that thing you always wanted to learn because LET ME TELL YOU it comes in handy to have a billion hobbies when you need a distraction for your brain!*

Hugs to you, my wee darlings!

*I’ve joined the Online Academy of Irish Music because DAMMIT I will learn how to play the bouzouki and I will DOMINATE at any Irish sessions in the after times.