Always Going Before Us


Always Going Before Us
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The beauty of God is He is always going before us, preparing a path on roads we don’t even know we’ll travel someday. Such was the case for Caryn Leavens.

It’s easy to think the story of Caryn’s daughter Camryn’s cancer journey began in early 2022. Sure, that’s when the then-12-year-old got sick, but God, unlimited by the boundaries of time, began working on her behalf long before that.

Caryn was happily employed as a nephrology biopharmaceutical representative in 2021 when a friend she worked with several years earlier approached her about coming to work at his current company. She initially declined, but after praying, decided to make the move.

In her new role as a hematology oncology account specialist, Caryn began learning about a pharmaceutical drug for certain B-cell malignancies.

Fast forward to early 2022 when Camryn started having difficulty breathing while exercising, developed a terrible cough, and began experiencing extreme fatigue that made it difficult even to walk up a flight of stairs. Despite the doctor thinking it wasn’t anything too serious, Caryn had an uneasy feeling, telling friends, “I just don’t trust this. I don’t feel like we’re figuring out what’s going on. Please pray with me because this is starting to get scary.”

It was after Camryn woke up drenched from a night sweat—uncommon for someone her age—that Caryn began thinking back to what she had learned about B-cell malignancies. While everything began to add up, she still couldn’t fathom the possibility that Camryn had cancer.

“Easter Sunday was my final straw when she could not run 10, 15 feet against her older cousins for money eggs out in the yard,” Caryn said.

"Her pediatrician said, ‘Our sweet Camryn has a mass, and it’s a large mass.'"

The following morning, Caryn took Camryn to the pediatrician, who ordered blood work and a chest X-ray. The latter confirmed Caryn’s worst fear.

“I took her back to school and was maybe five miles down the road when I got a call. Her pediatrician said, ‘Our sweet Camryn has a mass, and it’s a large mass’,” she recalled. “I remember distinctly what road I was going down, where I was in the road, and I said, ‘I’m sorry. What do you mean? Can you elaborate on that?’”

The mass appeared to be a lymphoma measuring 9-by-16-by-14 centimeters in Camryn’s chest. Instructed to take her to the hospital immediately for a CT scan, Caryn still remembers how brave Camryn was when told she may have cancer.

“If it is cancer and I do have to have chemo and I lose my hair,” Camryn told her mom, “I just hope it comes back straight and blonde like it is.” (Spoiler alert: it’s dark and curly, and Camryn loves it.)

With her dad, Jason, and younger brother, Elijah, now at the hospital, Camryn was prepped for surgery. However, the large mass in her chest prevented her from laying down without gasping for air, making it difficult to get the necessary scans. It ended up being for the best, though, as her oncologist the next day said Camryn’s cancer needed to be treated with chemotherapy instead.

A pathology report indicated Camryn had primary mediastinal B-cell lymphoma (PMBCL), stage 3. Because of the size of the mass and the pressure it put on her chest, there wasn’t enough of a vein opening for a port or PICC line, so a femoral line had to be inserted instead. Plus, since Camryn couldn’t breathe while laying down, she couldn’t be flat or fully sedated, increasing the chance the procedure could be fatal.

“It was excruciating going into (the procedure),” Caryn said. “The only thing that kept Camryn calm was praying.”

With a rare diagnosis of PMBCL, the focus shifted to treatment. Cincinnati Children’s Hospital Medical Center was a site for a clinical trial, but that would mean being away from home for lengthy periods. Still, the benefits, including Camryn potentially having access to an investigative drug, outweighed the negatives, Caryn said, adding, “God made it abundantly clear that we needed to go there.”

“The investigative drug happened to be the product that my partner sold before he came over to where we are together working with the current product,” she said. “So, it was just another, I think, beautiful gift that God gave me of not only did He prepare me with some of the background I needed to help get her diagnosed, but then also my partner used to sell this drug that is already on the market (for other cancers).”

Caryn said God reaffirmed the family’s decision when they were connected with Cincinnati’s Ronald McDonald House, which provides families a free place to stay while their children receive treatment. During a tour, she noticed a sign that read “AbbVie Expansion Tower.” AbbVie, whose donation in 2018 allowed for a 99-room addition, is the company she went to work for in 2021.

“I had chills. I was crying," Caryn recalled. "Here’s a company that I didn’t even work for yet that gave so generously knowing that the need was there to help the community, to help patients seek the care that they need.”

Camryn initially was in the hospital for about 3 ½ weeks. For the first 18 days, until she experienced enough shrinkage in her chest, she couldn’t lay down because it would have made breathing too difficult.

Camryn’s treatment regimen consisted of a 24-hour drip of various chemotherapy mixtures for six days, followed by 15 days of rest. Undergoing six rounds, she was to finish treatment in about four months. However, that would be extended if her blood cell counts were too low to begin the next round of chemotherapy, which they often were.

With every two rounds of treatment, the dosage increased, and so did the severity of the side effects. Camryn developed mucositis—open wounds in her mouth and along her gastrointestinal tract—during the fourth and fifth treatment cycles. That progressed to typhlitis in the sixth cycle, where the open wounds continued farther into her large intestine, causing excruciating pain similar to appendicitis.

When able, Camryn returned home between treatments. Since Jason and Elijah were unable to be with her and Caryn in Cincinnati much, the family made the most of their time together, including visiting the zoo.

“She had this (IV) pole everywhere she went,” Caryn remembered. “So, she ended up naming it Jessica. She called it ‘Jessica the Stalker’ because she couldn’t even use the restroom without Jessica coming in with her. She always kept this positive attitude of, just like, ‘We’re getting through this!’”

Caryn was amazed by Camryn’s resiliency through each step of her treatment.

“She was remarkable going through it,” Caryn said. “In fact, before she actually got started on treatment, she said, ‘You know, people say, “Why me? Why me?”’ and she said, ‘I know God chose me for this. God chose me because He knows I’m a good teacher. So, if you think about it, it’s an honor that He chose me’.”

“God has had such a remarkable hand…in all of this that I think it’s just a beautiful explanation on why things worked out as well as they have so far.”

Optimistic that her treatment was successful, Camryn chose to ring the bell following her final round of chemotherapy instead of waiting for clean scans. While she returned home, the family asked the Ronald McDonald House to keep their room available because they knew Camryn likely would develop mucositis again. Sure enough, she was back in the hospital just a couple of days later with neutropenic fever and mucositis.

Camryn’s oxygen level had dipped so the ER doctor ordered a chest X-ray. Caryn remembers the shock she felt when the results in the electronic medical record didn’t just indicate low oxygen levels, but also only a “partial resolution of mass.”

“I read that, and it hit me like a freight train,” she said. “That was so hard for me to see because I knew at this point that we weren’t done. In her mind, we were just doing this one stint of chemo and it’s all gone, but I knew I couldn’t tell her what I just read because she’s battling with this mucositis and fever and everything. And she feels terrible. She hadn’t eaten or had anything to drink in six days.”

Camryn’s doctor thought radiation would be needed to further shrink the mass but wanted to wait six weeks to see if her scans improved. They did, so radiation wasn’t needed after all. That was a huge relief for Caryn, who had worried that radiation in Camryn’s chest could result in breast cancer later in her life.

While the mass in Camryn’s chest remains, it is considered to be necrotic. Although it is essentially benign scar tissue, it sits on her phrenic nerve, partially paralyzing her right diaphragm, making it more difficult to breathe with exertion and causing her heart to beat faster.

Camryn, however, hasn’t let that slow her down—literally. This past Fall, she ran on her school’s cross country team, regularly finishing in the top third. Caryn and Jason initially had reservations, but Camryn’s cardiologist assured them she would be fine.

Despite her resiliency, Camryn has struggled at times with the fear and anxiety common for anyone who has had cancer, let alone someone so young.

“She was haunted with thoughts of dying after finding out that it wasn’t gone, and she didn’t share that with me for about two months,” Caryn said. “She was struggling until it would hit her multiple times a day, and she said, ‘It’s just getting to the point that I can’t distract myself.’ That was heartbreaking because she’s always so open about everything, and this was one that I think she just didn’t want to burden anyone with. She thought she could control it on her own with prayer.”

Christian-based counseling has helped Camryn process those complex emotions, and her focus now is on normalcy.

“I think it’s just about trying to be normal again and live that normal life, whatever that is now, be with her friends, and look forward to high school,” Caryn said.

The road that Camryn and her family have traveled the past couple of years isn’t one they ever imagined they’d be on, but it’s one that has brought them closer together.

“I know Camryn and I will always have a bond,” Caryn said. “We had a special bond before, but there is just a whole other level now. I can’t leave in the morning without her needing a big hug. Just very loving, not taking moments for granted that I think can easily be overlooked.”

The journey has also shown Caryn and her family how much they’re loved by those around them, including their church family.

“I do believe that it has connected us with the church more,” she said, adding others, from friends to those at their kids’ schools, also have supported them.

Looking back at everything that has happened over the past few years, beginning with her friend asking her to come work with him, Caryn said it’s impossible not to see how God was clearing a path on a road that only He knew they would be traveling.

“God has had such a remarkable hand…in all of this,” she said, “that I think it’s just a beautiful explanation on why things worked out as well as they have so far.”