The stem cell donor search event will be held on Saturday, June 22, from 10 a.m. to 3 p.m. in the Central High School cafeteria, located at 655 Caddo Street. Registration is free.
SAN ANGELO, Texas (Concho Valley Homepage) — For most 18-year-olds fresh out of high school, the next step is to figure out where to go to college or what career to pursue. Carlie Jo Johnson hasn’t been able to say the same, however, due to a battle with an aggressive form of cancer. We spoke with her to learn about her journey thus far — and what you could do to possibly save her life.
From bruises to chemotherapy — how it began
April 2024 was going to be like any other month for the Johnson family. Carlie Jo Johnson was having fun before Central High School’s Casino Night event with her date by making a TikTok video. During the video, he would throw her into a nearby patch of grass before the pair would pop out of the brush wearing their dress clothes, ready for the festivities ahead of them.
Then the bruises came. The weekend after the TikTok was filmed, bruises began to appear all over her legs from where she fell into the grass. Carlie Jo Johnson went to get bloodwork done to see what caused the injuries, braving her fear of needles to do so.
“I have a huge fear of needles after a lot of hospital stays when I was little, I knew I needed blood work,” Carlie Jo Johnson said.
She would pass out at work the same night she had her blood drawn, something she and her family thought was just a byproduct of the testing. The next day, she felt as though she was going to pass out again during a field trip to Howard College. Carlie Jo Johnson called her mother to ask her to pick her up, unaware that life-changing news had already been given to her mom by the doctors.
April 24 is a day forever seared into the minds of the Johnson family. TaLisha Johnson, Carlie Jo Johnson’s mother, had just pulled into the parking lot of Water Valley Elementary School for a meeting when she got a call from the doctor’s office. It was then that she learned that her daughter had acute leukemia.
“After getting the news from her doctor I just sat stunned in my car,” TaLisha Johnson said. “Not crying. Just staring off in space.”
Carlie Jo Johnson had a similarly stunned response to the information. Her life had come to a screeching halt in many regards at that exact moment, with life as a graduating senior and a future of attending college being suddenly put on hold.
“Up until the day of my diagnosis I felt fine,” Carlie Jo Johnson said. “I was living my life as a senior getting ready to go to Texas Tech in the fall. I was making plans for prom and my graduation party. The only symptoms I had were bruising and the one fainting episode. For days after being admitted to the hospital I kept saying, ‘This isn’t real. I’m fine. I don’t have cancer.'”
After being told her diagnosis, life for her and her family became nothing short of a blur. She was transported to the UT Southwestern Medical Center in Dallas, Texas, where they learned more about her condition while she was admitted there for a month.
Carlie Jo Johnson was told that she has acute B-cell lymphoblastic leukemia. According to the National Cancer Institute, acute lymphoblastic leukemia is “a type of cancer in which the bone marrow makes too many immature lymphocytes (a type of white blood cell).”
“There are stem cells (baby cells), middle-sized cells (like teenage cells) and full-grown cells (adult),” TaLisha Johnson said. “With acute leukemia, the ‘teenage cells’ wreak havoc, invite their friends and take over the marrow, bone and then the body.”
It was also discovered through cytogenetic testing that she had a mutation in her KMT2A gene. This haywire gene means that she is at a high risk of her cancer returning after remission.
Several additional tests revealed that Carlie Jo Johnson had gone from 191,000 white blood cells to almost 250,000 within the span of 24 hours, indicating a highly aggressive form of leukemia. It was also discovered that over 90% of her bone marrow and 84% of her bones were filled with leukemia blasts, defined as a type of “immature blood cell” by the National Cancer Institute.
From this information, the medical staff gave the Johnsons a harrowing piece of information — had their family waited 2 more days, her cancer would have been untreatable.
“We couldn’t even wrap our heads around all that was thrown at us that night as she was admitted into the ICU, and they immediately started chemo,” TaLisha Johnson said.
Treatments and today — what’s happening now
After being admitted to the UT Southwestern Medical Center, Carlie Jo Johnson was immediately put on a regimen of chemotherapy and other treatments designed to combat the cancer throughout her body as quickly and effectively as possible. She began with low-dose chemotherapy to avoid shutting down her kidneys, which was followed up with bone marrow biopsies.
“They did a bone marrow biopsy that was scary and painful,” Carlie Jo Johnson said. “Anyone who says it is just pressure is lying or has never had one. Doctors told me the first one is the worst because there are so many leukemia cells in the marrow. I’ve had one since then and it wasn’t any better.”
The intensity of her care would only increase from there, necessitated by the aggressive nature of her cancer. She would begin taking doxorubicin — a medication dubbed “The Red Devil” due to its propensity to make the patient extremely ill and dye bodily fluids such as tears and sweat red — chemotherapy pills that her “mom cannot even touch” and weekly shots to the brain and spinal cord to prevent further spread, among other treatment methods.
Carlie Jo Johnson’s perception of her appearance would also be dramatically shifted due to certain treatments. She would eventually lose her hair due to chemotherapy, part of her she hoped she would keep.
“After talking with the oncology pharmacist, I found out I would lose my hair from the chemo treatments,” Carlie Jo Johnson said. “I ended up having a lot of family around me as my Aunt Tiffy shaved my head and we played upbeat music. Don’t be fooled, I still bawled my eyes out as we FaceTimed my sister. It was still really emotional but it was one of the few things at that time in my world that I could take control of.”
Steroids taken during her first month of treatment would also cause her to develop mood swings and change her appetite. Though the memories she has made while using the steroids have been embarrassing for her, their integral nature to her treatment prevented doctors from lowering her dosage.
“They changed my body in ways I didn’t even know my body could change,” Carlie Jo Johnson said. “I’m just embarrassed looking back, but everyone was patient with me, and I’m glad I’m off of them now and for the most part back to normal.”
Though treatment for her leukemia is still ongoing, one vital part of turning the tide in her battle against cancer is missing — a 100% compatible stem cell donor.
The search for a stem cell donor — how you could save Carlie Jo’s life
Carlie Jo Johnson is working alongside several organizations and volunteers to host a stem cell donor search event on Saturday, June 22, from 10 a.m. to 3 p.m. in the Central High School cafeteria. The goal? To find someone capable of giving a perfect matching donor that could give her a blood stem cell transplant that would possibly save her life.
The event asks attendees between the ages of 18 and 55 to get the inside of their cheek swabbed and register as donors. If they match with Carlie Jo Johnson, they could provide her with the blood stem cells needed to ensure that her cancer stays gone following treatment.
The reason for the search comes from the KMT2A genetic mutation found within Carlie Jo Johnson’s DNA, which puts her at a high risk of developing cancer again after remission. As such, a stem cell transplant is needed to ensure that her leukemia doesn’t return. None of her family members are a perfect match for her, though, meaning that the effectiveness of transplants from them is not guaranteed.
“Full siblings have a 25% chance of being a 100% match. My brother, Hayden, is a half-match,” Carlie Jo Johnson said. “Because parents each give one chromosome they are not tested because they can only be a half match at most.”
Further complicating matters is that there are 20 known perfect matches worldwide as of now. These matches are in Israel, however, a region currently locked in an intense military conflict that is preventing donors from assisting in her treatment.
“It is so disheartening because in a region ravaged by war, there are people who are registered to donate, but we cannot touch them because of the unrest there,” Carlie Jo Johnson said.
Back in the United States, TaLisha Johnson said that “only 2% of Americans are in the Bone Marrow Registry and only 51% respond to the call when they are asked to donate to save a life,” making finding a donor within the country an exceptionally difficult task.
With few options remaining, the Johnson family reached out to the Concho Valley to ask for help in saving the life of a San Angelo local. The response has been pleasantly overwhelming.
“We have not been around town to see all the flyers or the billboard for the donor drive, but we are constantly getting messages with pictures of them that come at the perfect time and remind us of the army of supporters behind her,” TaLisha Johnson said. “Last I counted, there are people and churches in at least 21 countries praying for her.”
Carlie Jo Johnson has already prepared for the worst, though. In the event that no donor can be found and a transplant from her brother is unsuccessful or not possible, she said that she is at peace with herself and rooted in her faith.
“If something happened and my brother could not be used or a donor couldn’t be found I have already told my mom I am at peace,” Carlie Jo Johnson said. “I know where I am going and I would want to live out the rest of my life on my terms without the side effects of chemo and just be happy. I am at peace. I know who I am and who’s I am.”
Life goes on — how she’s holding up
Treatment hasn’t been easy on Carlie Jo Johnson. It, combined with the cancer, has sapped her strength and oftentimes made simply being awake a task in and of itself.
“I am so tired and have a lot of headaches,” Carlie Jo Johnson said. “I just don’t have a lot of energy and am sleeping a lot. It makes my body feel really weak.”
The situation has also taken an emotional toll as well. Her battle against cancer has run her through a gauntlet of feelings and experiences, many of which have been difficult to process when first encountered.
“In the beginning, I think I was in denial. I told my mom, ‘God only sends his warriors into battle, mom. I got this.'” Carlie Jo Johnson said. “I have to remind myself of that a lot because it is hard to remember that sometimes. It’s hard to keep a strong, powerful attitude all the time. … I walked into this not knowing what I was getting into. Nothing prepares you for this.”
Her loved ones have joined her on this journey, too. This includes every last bump, roll and hill on the emotional rollercoaster.
“People say ‘God will never give you more than you can handle.’ I absolutely hate that saying,” TaLisha Johnson said. “We are not meant to ‘handle’ any of this because, as parents, we still cannot even wrap our minds around this reality. We are meant to give it to God to handle. This is where we have found our strength to put one foot in front of the other every day.”
In the end, Carlie Jo Johnson and her family are learning one major lesson time and time again as they fight for the life of one of their own — that life, be it short or lived in full, is an experience to cherish and protect.
“At the end of the day, worst case scenario and I don’t survive this battle, just know that I am so incredibly thankful for those who are going to show up to the event and register to save the lives of people like me,” Carlie Jo Johnson said. “Just knowing that even one life could be saved from my donor drive would be awesome and I am happy with that. That’s a good life.”
