Childhood Cancer

Last year, Courtney Thomas sat snuggling her two-year-old daughter, Zoe, in her lap. As she rubbed Zoe’s neck, she felt an odd swelling. As a pediatric nurse, she knew something was wrong.

“My radar was already up because she was fatigued and had been fighting an ear infection,” Courtney said. “A few days later, my husband noticed tiny bruises on her collar bone. We took her to her pediatrician the next day.”

Bloodwork confirmed what Courtney had begun to fear. Zoe had leukemia. Ironically, Zoe became a patient in the very hospital where Courtney works as a nurse. Her initial hospital stay lasted 19 days. While they were inpatient, the COVID-19 pandemic began to rage.

“Her whole treatment has been during the pandemic, and it adds a layer of worry,” said Courtney. “During one of her hospital stays, I was seven months pregnant. At the time, only one parent could stay with her. It’s tough to be that pregnant and alone while trying to entertain and care for a sick toddler. Being away from home so much has been difficult for her and her older brother, Arlen.”

Courtney has since delivered a healthy little boy, and Zoe is thrilled to be a big sister. Zoe is now in the maintenance portion of her treatment. She takes oral chemo pills nightly and goes in once a month for a chemo infusion. But Zoe’s treatments often make her immunocompromised, and with COVID still around, life has yet to return to normal.

“We are incredibly thankful for friends delivering meals and helping us around the house,” said Courtney. “But the isolation has been hard. We miss being able to go to church and visit with friends, and sometimes we feel isolated or even forgotten.”

While the pandemic has caused Courtney and her husband, T.J., to feel alone at times, they met a new friend in the hospital who has made a big difference. Courtney said:

“CURE has been here for us from the very beginning. As soon as we were diagnosed, we were given a CURE tote which included basic toiletries, which was appreciated since we weren’t admitted until after 8 pm. We also realized very quickly what an enormous blessing the Open Arms meals are. Having food served to us took away a great deal of stress because it was one less thing to worry about.”

“CURE has also been a huge support for us out of the hospital as well. The Quiet Heroes event came right after we had gotten back home from the hospital and was such an uplifting and encouraging experience for us both. I began to realize that we are not alone – we are now a part of a huge tribe of people, parents who love their children fiercely and will all fight for these kids and support one another together.”

Lastly, we have been so thankful for the counseling services CURE offers. CURE found a counseling group that has experience helping families going through childhood cancer and covered the cost of our counseling sessions. We have been able to take advantage of these services to be sure we are processing and handling the stress and change well and openly communicating about how we are feeling and know that how we are feeling is okay!”

All of this support has meant so much to them that, even though Zoe is still in treatment, the Thomas family has sponsored Open Arms meals for families of hospitalized kids. And as for Zoe, she is feeling much better and is back to singing, dancing, and trying to keep up with Arlen. It’s been a year since her diagnosis, and her treatment will continue until June 2022. While that seems like a long time, the entire family has learned that mixed in with the tough days will be some really good days.

Khairi loves baseball. He doesn’t even mind the bumps and bruises that result from playing hard. But when he was four years old, something odd happened. He got hit in the eye with a ball, and his mother, Michella, expected swelling immediately. But it didn’t come. In fact, it was days before the shiner appeared, and it lasted for nearly a month.

Unbeknownst to Michella, the reason Khairi’s eye didn’t swell was because his platelet count was dangerously low. Soon after that incident, he began to lose weight and got several unexplained fevers. The second time Michella had to leave work to get him from school, she took him to the hospital for evaluation.

“The nurse took a blood sample,” Michella recalled. “Then she came back and took another. After a few hours and two more samples, I knew something was wrong.”

Michella’s family has a history of lupus, so she imagined this might be the cause. But when a team of six doctors, including an oncologist, came into the room, her world was shattered.

“They told me Khairi had leukemia,” she said quietly. “It’s a lot to hear that your baby has cancer when you’re all by yourself. I had to leave the room so I wouldn’t break down in front of my four-year-old.”

Soon Khairi was whisked away for blood transfusions to get his white blood cell count down, followed by surgery to place a port for chemotherapy. In a few days they learned that Khairi had acute myeloid leukemia (AML). His plan included seven rounds of intense chemo, with a break to recover in between each round. But it took Khairi’s body a long time to recover every time, and he rarely got to stay at home more than a few days.

Fortunately, Khairi was cancer-free after his final treatment and got to ring the bell at the hospital, a special tradition at the end of treatment. Michella had been forced to take a leave of absence from work, so they went home to rebuild their lives and get back to normal. But normal was short-lived. After a routine follow-up visit months later, Khairi’s doctor called them with the devastating news that the cancer was back.

“I was so angry,” Michella said. “I went back to work and thought we were finished. I never had one thought that this would come back and had let my guard down. When I got that call, I was lost.”

With just five days left in his first grade school year and a few baseball games left in the season, Michella let Khairi enjoy his school awards ceremony. Then she took him to the hospital where he began the process of a bone marrow transplant. The transplant went well, but Khairi reacted to the pain medication and was rushed to intensive care.  After he recovered and went home, he had some issues with graft versus host disease – a condition where the new bone marrow cells attack the recipient. But Khairi is strong and is pushing through it all.

“He’s finally doing pretty well,” Michella said. “Khairi has a long way to go, but we keep working through it all for each other.”

Khairi takes eighteen medications a day and is isolated because his immune system is so compromised. His transplant was a year ago, and he hopes to be back on the diamond playing baseball again soon. And with everything he’s been through, he will definitely be the strongest kid on the field.

Karalyn loves to draw and play soccer. On August 23, 2018, she left for school a healthy 10-year-old. But when she got off the bus, her life changed dramatically.

“I was waiting for her and she came bounding to me saying, ‘Mama, I’ve got something on my neck’,” recalled her mother, Jennifer. “What she showed me was a lump the size of a walnut. I tried not to panic, but I knew we needed to get her to a doctor.”

Her pediatrician started an antibiotic. But Jennifer took Karalyn to the emergency room for another opinion. The hospital sent her home with a different antibiotic. Two days later, the lump was even more swollen, so they went back to the hospital where where a biopsy was performed. On September 11 the surgeon called her to relay devastating news: Karalyn had Hodgkin’s lymphoma. The cancer was on both sides of her neck and her sternum.

“Karalyn had two very close relatives who had recently die of cancer,” Jennifer said. “Because of that, her only association with cancer was death, and we didn’t want her thinking that way. So we told her she had lymphoma but didn’t tell that was cancer.”

The family celebrated her 11^th birthday early so that she could enjoy it before chemotherapy started.

Jennifer said that Karalyn processes things better if she knows what to expect. If she knows what is about to happen, she can prepare herself and handle it better. But unfortunately, a cancer diagnosis can make an ordered life jumbled, leading to uncertainty and anxiety.

Karalyn’s oncologist said she appeared to be an open and shut case. She would have three rounds of chemotherapy and then another scan. At that point, a vast majority of children are cancer-free. But this was not the case for Karalyn. She endured two more rounds of chemo and was supposed to start 12 weeks of radiation. But she did not qualify for proton beam radiation and the side effects of general radiation to the chest cavity can be so severe that her medical team did not want to proceed. Her next scan indicated that the tumors were gone, and even though two of her lymph nodes were considered abnormal, Karalyn was in remission. One year and a day after she was diagnosed, Karalyn was cancer-free.

“Somewhere along the way, she figured out that lymphoma was cancer,” Jennifer said. “Her response was to say, ‘I know that God gave me cancer so that he could bring our family closer together.’”

Karalyn was so strong during her treatment that she only missed one soccer game the entire time. Although the happy girl who found the lump on her neck is back, the experience has changed her. She checks herself for lumps constantly and will run to her mother if she feels anything.

“There isn’t a day goes by that I don’t look at Karalyn and become filled with both pride and fear all at the same time,” said Jennifer. “So proud of the battle she fought and won, yet so fearful of what could be in her future.”

Karalyn is eight months cancer-free, but has had some troubling symptoms lately that led to new scans. While both mother and daughter are anxious, they continue to be hopeful that their fight is finished.

 

Click HERE to see the children participating in CURE’s Kids Conquer Cancer One Day at a Time.