Jordon Strong: Their journey

A Canon Event is defined as an unavoidable significant life occurrence that shapes a person. And if you’d ask the Seubert family, they’d probably say their canon event occurred on May 30, 2024.

Their nightmare began four months ago, when their then-19-year-old son, Jordan, was diagnosed with an aggressive form of T Cell ALL Leukemia. He had just returned home to Tipp City from Bowling Green State University for the summer when he started feeling “off.”

“Those symptoms were rapid heart rate, out of breath, light headiness, dizziness,” Jordan Seubert said.

“I kept saying let’s go to the doctor, and he’s like, mom, this isn’t the thing you go to the doctor about,” Karie Seubert said. “He just kind of felt bad and he didn’t have a lot of energy. I don’t think it was until he was at a Memorial Day party that they were out there playing soccer, and he couldn’t go out for more than 30 seconds. This kid has played soccer hardcore since the age of four.”

Karie took Jordan to his family doctor on Thursday, May 30, 2024. It was the result of a simple finger prick that changed their lives virtually overnight.

“The doctor came in and said, you gotta get him to the ER right now. His hemoglobin is at a 5 and I had no idea what hemoglobin meant. So, I got in the car and googled what that meant and I saw the number and the parameters of what is normal.”

In a moment, Karie had to decide which hospital to take him to. She opted for Dayton Children’s, and now, looking back, knowing how many specialists he would later need, she’s so glad she did. By the time they got there and re-tested his hemoglobin, it had dropped to 4.5. According to the Cleveland Clinic, for men, normal levels range between 14 grams per deciliter and 17.5 gm/dL. Anything under 13 is considered severely low.

Testing also revealed a low white blood cell count and low ANC numbers. ANC stands for Absolute Neutrophil Count. Neutrophils are a type of white blood cell that helps the body fight infection.

Two days after being admitted to the ICU, doctors officially diagnosed him with T Cell ALL Leukemia, which doctors say is a rare and aggressive type of blood cancer. Four days after arriving at the hospital, doctors were surgically implanting a chemotherapy port. He got his first dose in the hospital where doctors could monitor how he’d react. After about a week, he was released. It was the day before his 20th birthday.

Cancer is a word no parent is prepared to hear, especially when it comes to their child. But it is something that Tipp City parents Karie and Mike Seubert are now facing head on.

“The biggest piece of advice we got was you have to take it day by day because if you don’t, it is just so overwhelming,” Karie said.

Jordan says he only noticed his symptoms for about a week or two before realizing something was seriously wrong. He went from being healthy, active, and living with a roommate at an apartment at BGSU to now being isolated in his parents’ home, balancing hospital stays and treatment. Because his body is so immunocompromised, they must take extreme precautions, even at home.

“If his ANC is below a thousand, he is basically supposed to isolate at home. So, for my husband and I, we wear gloves at home. If Jordan comes into the kitchen or pantry, we have him wear gloves so there is no cross contamination with germs. A common cold could really put him into a tailspin.”

Karie says they also have UV germ protectors around the house to help clean the air, and when they have visitors, they sit outside, six feet apart. If they go to visit him indoors or at the hospital, they must wear a mask.

“He has a girlfriend. When she comes up, we try to have them sit outside six feet away. And any visitors that come to the hospital or our house, they have to wear a mask.”

Jordan and his girlfriend have only been dating ten months, but Karie says she’s been nothing but supportive.

“For being so young, I can’t imagine at that age, having my boyfriend be diagnosed with TCELL ALL. You can’t go out to dinner, you can’t go to the movies, you can’t touch each other. You can’t give hugs, and that’s a lot. She’s been there. She’s visited him multiple times.”

In fact, he’s only had two moments of normalcy since first being hospitalized on May 30. In four months, he’s been to a restaurant twice, once with his friends and once with his girlfriend.

In some ways, Jordan has been lucky -- his cancer was caught quickly. However, his cancer journey has been anything but easy.

For most of us, chemotherapy is a treatment we hear a lot about but know very little about. It is given to patients in phases. The first phase is called induction. His mom says during this phase, Jordan did well. His body tolerated the chemo and his leukemia numbers dropped from 75 to .7.

Then the day before they were supposed to start phase two, which is called consolidation, he started throwing up at home. They took him to the hospital and his calcium levels were high. He had pancreatitis and was in the beginning stages of liver failure. He was in the hospital for two weeks.

“They don’t know really what caused the high calcium, high liver, pancreatitis. They suspect it might be one of the chemo’s that he had.”

After the consolidation phase, doctors didn’t give him chemotherapy for four and a half weeks. During that time, his numbers grew to 85.

“We’re being told that this is not normal, that Jordan has a very aggressive type of T Cell Leukemia. I mean T Cell Leukemia is a little rare anyway. It’s only like out of all the leukemias its only 10% and typically it affects adolescents,” said Karie.

Because of Jordan’s reaction to the chemotherapy, doctors have decided to go in a different direction with his treatment: a bone marrow transplant.

Jordan is currently at Dayton Children’s Hospital undergoing a hardcore chemotherapy treatment to get his body ready for a bone marrow transplant. He may also be taken to Houston, Texas, for a new medical trial called CAR-T. If all goes well, he’ll go to Nationwide Hospital in Columbus for a bone marrow transplant.

“The change from the original plan to the bone marrow, those first couple of days, I was rock bottom. But then I was like this is a new opportunity,” Jordan said. “I don’t want to affect people around me too much, so I’ve just been embracing everything and just being as happy as possible.”

For Jordan to get a bone marrow transplant, he needed to find a donor. So, family and friends held a “Be the Match” event for him to find one.

“Just to see a lot of his old soccer teammates from high school come and get tested. It just means a lot to see people support your child. Just giving their time and a part of themselves to help heal your child just means the world,” Karie said.

Despite a huge turnout, as it would turn out, his perfect match was already in the family. His older brother was a perfect 10/10 match.

“It’s pretty special. It’s one thing if it is a random person and you might talk to them once or twice, but this is something that will stay with us for the rest of our lives that he saved me,” Jordan said.

Jordan and his brother Cameron are only three and a half years apart in age. They both grew up loving soccer; however, brotherly bonding time looks a little different these days.

“Now that Jordan can’t really play soccer because it is a contact sport, they like to play FIFA on Xbox,” Karie said.

While Jordan’s perfect match was his brother, Karie and Jordan both want to highlight the importance of getting tested and blood donation.

“If they are able to, if they are healthy, get tested. Maybe they’ll save a life. And if they don’t want to do that, maybe donate blood or plasma. Just give back to the community.”

To get your bone marrow tested, you need only a quick cheek swab. Because of advances in medicine, it isn’t a surgical procedure like it once was. To donate, you have to be between the ages of 18 and 40.

To learn more about bone marrow testing and how the process works go to https://my.bethematch.org.

And as for the Tipp Community?

“It’s the great thing about Tipp City. It’s still a small enough community. It’s the type of people who live in Tipp, they are just supportive of each other, and it is truly heartfelt.”

Jordan also wants to thank his family and friends.

“It’s shown me that even during your toughest days that there are still people who care about me no matter the circumstance, and that’s propelled me to keep fighting,” Jordan said.