Lukey’s Spotlight Luke was 18 months old when he was diagnosed with…

Lukey’s Spotlight 💚
Luke was 18 months old when he was diagnosed with leukemia.
A mass showed up on his neck seemingly out of nowhere. Daycare noticed it and called me, and I had him at the doctor’s office within 30 minutes. He never seemed too bothered by it...but honestly, Luke was bothered by life in general. 😆 Between colic and a dairy intolerance, he had a rough go his first year of life, so I didn’t notice anything else that seemed terribly out of the ordinary.

But my gut told me something was off.

Thankfully, his doctor stayed on top of it and continued following up with us.

Twenty-one days after that lump first appeared, we were at Children’s for an MRI. That day, April 16, we learned Luke had cancer—and that we wouldn’t be going home that night. The days that followed were a whirlwind of bloodwork, biopsies, surgeries and tests. His central line was placed, and he had to have a second biopsy of the tumor in his neck because the first didn’t collect enough cells for pathology. About a week later, he started his first round of chemotherapy.

When the pathology came back, we learned that the leukemia Luke had was rare and aggressive. His team told us that for him to have a chance, he would need a bone marrow transplant.

So all of us were tested and none of us were a good match. His team searched the registry, found him a match, and we celebrated BIG. We were so incredibly thankful.

Round two of chemo was pretty uneventful, all things considered. I think that hospital stay was about 28 days. Luke terrorized the playroom, bossed around the nurses and requested fried chicken pretty much every night. By then, his hair had already started falling out, so it felt like we made it through that round without taking too many more major hits.

Round three was busy. Luke had all of his pre-transplant testing: MRIs, PET scans, EEGs, EKGs, ultrasounds of every major organ, chest X-rays and even a trip to the dentist, where he absolutely refused to let the dentist touch him. 😆 This round was harder. He had fevers, and his chemo doses were so high that we had to put eye drops in his eyes every couple of hours. Then one of his PET scans showed an area lighting up where his original tumor had been. So we went back for more biopsies.

For the third time, they cut into Luke’s neck. This time they removed the entire lymph node and tested it, and it came back clear. Luke was headed to transplant. 💚

Right before transplant, we celebrated his second birthday. We threw him a boxing-themed party, which felt pretty fitting. Our baby was finally feeling good. Cancer-free. Happy. Outside of the hospital and just enjoying being a kid. Two days after his birthday, we were admitted for transplant.

Luke had another surgery to place a Hickman central line, complete fertility preservation and place an NG tube. Then the show was on the road. He started seven days of conditioning chemotherapy. That chemo was horrid. Luke developed mucositis. He needed multiple blood products. He developed a surgical-site infection from his fertility preservation procedure. This little boy puked blood, pooped blood, couldn’t talk and lived on a pain pump. He ended up on TPN, several antibiotics and blood-pressure medication. He was miserable. He was fighting for his life. And then he engrafted.

Slowly, our Luke started coming back. He began feeling better and acting more like himself.

And on this day, two years ago, my baby rang the bell. 💚🔔

But 174 days after his transplant, Luke relapsed.
He was still so fragile from the transplant and from everything his little body had already endured... but we were ready to fight that ugly beast again.

But it didn’t work out that way. After talking with his oncologist, we made the hardest decision of our lives. We chose quality over quantity. We chose Luke.

The odds weren’t just bad—they were horrible. Luke had been given about a 10% chance of survival the first time around, and after relapse, those odds were even worse.

So we went home on hospice....And we lived.

We lived every day like it was the last, because we knew that one day, quite literally, it would be.
We took trips. We celebrated holidays every weekend. We became a “yes” household. If it could bring that little boy joy, we did it.

They gave Lukey 3–5 months.
My fighter baby gave us six.

He was the literal definition of unbreakable. Cancer didn’t break him. And somehow, through everything it took from us, Luke forced all of us to look at life through a different lens.

I am thankful for that little boy every single day.
Luke taught me so many things, but one of the biggest was this:

Life doesn’t have to be long to change the world.

Luke was so many things.
He was funny. He was smart. He was stubborn. And he was always in charge. He loved dinosaurs, his taggies and baseball. And he loved his brother. Lincoln was always the best medicine for Luke. Their bond was something incredibly special, and getting to watch them love each other will forever be one of the greatest gifts of my life.

Every day, we miss Chung.
Every day, I wish we had more time.
And every single day, I am thankful for every second we got to be his family.
This is Luke.
Our fighter. Our Lukey. Our reason.