Bradley started running track for the middle school team. It is a little out of his typical comfort zone, but it is good for him. He also represented his middle school at the county-wide learning exhibition, showing a game he coded about the Revolutionary War and Lego replicas, which is much more in his comfort zone.

 

Opal performed in her elementary school talent show playing the baritone ukulele and singing "Brave" by Sara Bareilles. I don’t think she gets nervous at all in life. She is unflappable.

 

I am in a challenging season right now for work, but I continue to deeply appreciate the opportunity to engage in serving our students, staff, and families and use my problem-solving skills. I deeply miss being in the full-time classroom but realistically with treatments don't have the flexibility for that to be a workable routine for our family. So I remain grateful for the opportunity I have to impact change in public education.

 

This weekend, I had the honor of being one of the keynote speakers for the Camp Kesem fundraising dinner at the University of Richmond. Camp Kesem is a camp that serves kids whose parents have cancer and allows them a week to connect with other kids with similar lived experiences and frankly just be a kid. 

 

We are waiting another month for scans to be three months out from radiation to see if that was successful. 

 

I will close by sharing my remarks from the Kesem dinner this weekend. As always, thank you for following along this journey with us.

 

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I wear a lot of hats in life and in our community. By far the most important of those is wife to Mason and the proud mom of Bradley and Opal. I also happen to have incurable cancer.

My biggest dream is to raise my two kids and grow old with my husband who has been my best friend since we were 13 years old. 

My life with them is what I want to define me, not cancer.
When I think about how I want my kids to describe me, and eventually remember me, I don’t want it defined by cancer and treatments and hard days. I don’t want my kids to define themselves by those things either.

So in our house, we focus on the other things - things we can control, things we can celebrate, things happening now, not the “what ifs” of tomorrow. It’s a household of joy and laughter.

However, just because we carry it well, doesn’t mean it’s not heavy.

My initial cancer diagnosis came as quite a surprise (which is a very obvious statement). I was 30 with a toddler and preschooler, no family history, and diagnosed with breast cancer.

My husband and I approached it as something to get through, choose joy along the way, and move on with our lives.  And we did.

Our community flooded in to support all our physical needs...food, house cleaning, helping me watch the kids as I couldn’t even pick up my daughter to put her in her crib.

I spent a year in treatment and surgeries and was deemed cancer-free.

I was at low risk for recurrence and did all the things I needed to.

Six years later, the cancer returned to my lymph system, lungs, and liver. For the last 2 years, I have been living with incurable metastatic breast cancer. I will continue on some sort of treatment until I run out of options or the drugs become too toxic for my body to continue to endure. 

For the last two years, our needs have been different than the first time around.
This is no longer something to get through…this is our new normal.
We aren’t counting down treatments; we are celebrating that another treatment is available.

The kids are also different ages.
They can take care of most of the physical needs that others helped us with at my initial diagnosis. 

But they are also much more aware of what’s going on with me now than they were before. It’s all the unseen things that are harder now and heavier now - our community, and Kesem, help carry that for them.

When people find out you have cancer, they all want to do something.
If casseroles could cure cancer, the South wouldn’t need any oncologists. 

At my diagnosis, I declined friends bringing food. When they insisted on doing something, I asked for things for the kids. A pick-me-up for them or something to keep them occupied on days I don’t feel great.

As a mom, you can take care of yourself better when you’re not also trying to take care of others. 

Kesem helps stand in that space.

We lucked into finding Kesem.

Last summer, another mom at swim team one morning mentioned her friend’s experience with Kesem. My kids had just returned from their first sleepaway experience so, for the first time, a sleepaway camp sounded doable.
Then that afternoon, in the waiting room for chemo, I sat in the same chair I’ve sat in dozens of times in the last few years. I put my drink on the bookcase…and right there was a stack of information about Kesem at U of R.

Once I got settled in the chemo chair and all hooked up, I looked up more information for that summer’s program…doubtful that it would fit in our already booked out summer.
But it fit perfectly in a hole in my son’s schedule.
And they still had a spot. 

And he was willing to go.

I didn’t know how much my son needed his week at Kesem until he had it.
I don’t think he knew how much he needed it either.

The first thing he told me when he got home from camp was he met a friend who was just like him.
“His mom has the same kind of cancer you do. She’ll be in chemo forever and wears a scarf too!”

Come to find out, his mom’s diagnosis has no similarity to mine whatsoever except a type of Stage 4 cancer. But those details didn’t matter. For my son, he saw someone else who “got it.”

Someone else who knows the calendar revolves around treatment schedules.
Someone else whose mom always has weird hair.
Someone else whose tomorrow holds extra uncertainty.
Someone else who carries a silent load and in that moment it all felt lighter.

I was concerned that after sending my child to Kesem, he would come home with more questions. We don’t talk about the fact that Stage 4 cancer is terminal. We don’t talk about the statistics or prognosis or outcomes.

As a family, we chose to focus on what is going on right now, the good days, the things we can control, and intentionally making family memories.

I was afraid he would come home from camp with a heavier load than when he left.

But he didn’t.

Kesem is intentional about how the kids talk about their experience with cancer

They ask them “Who do you Kesem for?”

It allows the kids to share what they want without the pressure of specificity. 

It’s probably the first time my son has really talked about my disease with any depth.

And in that his load became lighter.

Kesem is an opportunity for kids to just be kids for a week, something my kids don’t always have the privilege of doing at home.

They are so dedicated to this mission that, as you have probably already figured out tonight, all the campers and counselors pick a different name to go by at camp.  It’s the opportunity to be whoever you want and leave the heaviness of cancer at home.

I thought my Bradley would pick something from Greek mythology like Zeus or Poseidon to go by.  Nope.  He picked Queso…because “mom, everyone likes queso.”  

On the way home from camp, he described an afternoon of “messy games” - and these are next-level messy like water balloons filled with paint and Twister with plates full of paint instead of plastic dots. 

We asked our reserved, buttoned-up child if he liked it. (He doesn’t even like his food touching on the plate.)
He paused and said, “you know Bradley wouldn’t have liked it, but Queso LOVED it.”  He went on to describe how Queso was King of the GaGa pit and ready to hit the dance floor.

Queso has become his carefree, easygoing alter-ego. Sometimes at home, we will ask if we can get “some of that queso-energy” when a situation needs more levity. 

This summer, my daughter will join in at camp too. She wants her name to be “Latte” because “well, Mom, I can be a lot-eh?”. 

Life with incurable cancer is a marathon, not a sprint. It’s a journey...and hopefully a very long one...where some seasons are more difficult than others. In the comfortable seasons, it is easy for me to forget about the weight that my caregivers and my kids still have hanging over them. Just because they carry it well doesn’t mean it’s not heavy.

Kesem has provided support that I didn’t know my family needed.

They help lighten the load.

_____

 

If you know a family that might benefit from Kesem, local chapters and programs can be searched here: https://www.kesem.org/.  Camps and programs are free to families.

Please note there is a “tribute” page on Caring Bridge that we can’t turn off. We really appreciate the donations so far however we have more than enough to continue communication. 

The donations here go to CaringBridge, not to Mason and me.