An Awesome 2020

In a year many described as a dumpster fire, 7-year-old Thor Conradi had a different take on 2020: Awesome!

And it wasn’t just his family he told, but a world full of people who listen to The Daily, a podcast produced by The New York Times for an international audience. The podcast had asked listeners to share things about 2020 for a podcast that aired December 23, 2020, titled “The Year in Good News.”

Have a listen to what Thor and his mom, Holly Conradi, of Williamsburg, said:

Holly: Hi, this is Holly from Virginia. And I was just calling about my 7-year-old son, Thor, who has had the best year of his life. [PHONE RINGS]

Luke: Hey, Thor. It’s Luke from The Daily. How are you?

Thor: Good.

Luke: That’s a pretty cool name.

Luke: Thank you.

Luke: So Thor, I heard that you had a pretty good 2020. Is that true?

Thor: Yes.

Luke: Can you tell me about it?

Thor: Last year I didn’t feel good, and I had to lay on the couch, and couldn’t play with my friends. This year I take this medicine every 30 days. It’s at CHKD and it helps me.

And now I’m feeling better, and I have energy, and I’ve been doing races and — in the 1 mile, and my best time is 8:19.

Luke: Whoah, really? Is that one of your favorite things to do? Do you like running?

Thor: Yes.

Luke: What other favorite things do you like to do?

Thor: I like to play with my brother.

Holly: So last night we were getting ready for his infusion this month, and he just said, like, what an awesome year 2020 is. So we are very thankful for all the nurses at CHKD in the Blood and Cancer Center and all the doctors. They have been there faithfully during the pandemic, making sure kids get their lifesaving medicine, and we’re forever grateful.

Here’s a little more of the back story. Thor started seeing CHKD pediatric hematologist and oncologist Dr. William Owen when he was 2 years old, and Dr. Owen prescribed iron infusions at CHKD’s Cancer and Blood Disorders Center. When Thor was 4, he started having high fevers and his lymph nodes became swollen. His bloodwork readings looked worrisome. A months-long work-up involved Dr. Owen and a host of CHKD specialists: Dr. Lauren Smith in allergy/immunology, Dr. Orhan Atay in gastroenterology, and Dr. Cassyanne Aguiar in rheumatology. Although no specific diagnosis could be established, it was determined that Thor most likely had a unique “immune dysregulation syndrome” that resulted in his symptoms. The physicians at CHKD thought he may benefit from monthly infusions of a medication, Actemra, that is used to disrupt an over-active immune system.

In hopes of potentially discovering a genetic cause for his condition, Dr. Owen referred Thor to a immune dysregulation specialist at Children’s Healthcare of Atlanta (CHOA). The Conradi family boarded a plane to Atlanta on Dec. 24, 2019. At the time, Thor had a very high fever, something he could never have gotten on a plane with in December of 2020. The Emory University specialist agreed Thor had some type of immune dysregulation syndrome, but couldn’t pin it down until more research is done on genome sequencing.

But he agreed monthly infusions of Actemra would be helpful in retraining his cells to stop firing off warning signs of fevers and swollen lymph nodes. The medicine also could improve his ability to use dietary iron.

So for the past year, Thor has received the infusions and gradually gotten his strength and energy back. His bloodwork report has improved.

Holly said that Thor has been going to the CHKD for five years, and the nurses, lab workers, doctors, and child life specialists have watched him get new glasses, haircuts, and even new little brothers.

“And now they get to see him healthy,” Holly wrote in an email. “Dr. Owen printed me out his bloodwork last week so I could frame it!”

Not only that but Thor’s shoutout to CHKD traveled around the world.