Childhood Cancer

A long weekend usually involves rest and celebration. But last Labor Day was the longest of long weekends for Lily Suddeth and her family. Lily had just started preschool weeks before, and her teachers noticed that she was quiet and didn’t like to be put down – especially after nap time. Her parents thought she simply might be adjusting to her new routine and surroundings. But when she started waking up during the night, they decided to take her to the doctor.

“At first, our pediatrician suggested she might be teething,” recalled Lily’s mother, Allison. “But her coloring was off and a blood draw showed she was severely anemic. So they sent us to the hospital for further testing.”

Because of her doctor’s sense of urgency, Lily’s parents suspected she might have COVID. But as the long weekend progressed and more tests were ordered, it became apparent that they were dealing with something else entirely. On Tuesday, Lily was diagnosed with acute lymphoblastic leukemia (ALL) and began her treatment.

“The situation was difficult because only one parent was able to be with the child in the hospital,” said Allison. “Since it was the height of the pandemic, we certainly understood the need for such rules. But my husband and I process information very differently, and it would have been helpful if both of us could have been there to support each other and ask questions.”

While they certainly had questions, this was not the first time the Suddeth family had dealt with cancer. Allison’s older brother, Daniel, was diagnosed with the same form of leukemia when he was two years old. She also has a cousin whose son recently finished his leukemia treatment and is a healthy seven-year-old. Both her mother and her cousin became invaluable resources for her in the early phase of treatment.

“I wasn’t born when Daniel was diagnosed, so I didn’t know all that went into his fight with cancer,” Allison said. “The treatment for ALL has changed since then. So it was great to have a cousin who had just been through it. Knowing both of them had survived gave us a great sense of hope and assurance that we could trust in God’s plan for Lily’s life.”

Lily reached remission after the first month of treatment, and her parents decided to enroll her in a clinical trial of a drug called Blinatumomab. This drug is usually given to patients if their cancer comes back after treatment. Studies have shown that receiving it during treatment can increase a patient’s initial survivability and prevent relapse. It proved difficult to administer to a patient so young, however.

“The medicine is typically held in a backpack and given 24 hours a day for 28 days,” Allison shared. “But Lily was too small for the backpack so she had to have a pack with a long cord. She got used to it in no time and actually came to like having mommy or daddy following her around all the time.”

Lily is doing great now. She spends most of her time trying to keep up with her older brother and sister and loves to play outside, ride her scooter, and swing. She should reach the less intensive stage of treatment before the fall so when Labor Day rolls around this year, Lily and her family can relax and enjoy the long weekend together.

Her voice is soulful, powerful, and angelic. When you hear Madison sing, you would never believe a voice like that could come out of a petite 21-year-old. You would also be surprised to know that five years ago, doctors found a tumor the size of a golf ball on her brain.

Her cancer fight started with a headache that came and went for three weeks. At the time, Madison was balancing life as a high school cheerleader and member of the golf team while maintaining a very high grade point average. She and her mother, Jennifer, were walking into a store when Madison stumbled and complained of a horrible headache.

“I asked if her headache was back,” Jennifer said. “She told me it had never completely gone away. I didn’t think much of it until she got sick the next morning.”

As a doctor of physical therapy, Jennifer knows more about the body than the average parent. The symptoms together had her worried, so she took Madison to the emergency room.

“I didn’t tell her because I didn’t want her to panic, but I felt like a brain tumor was a possibility and wanted to have them rule it out,” Jennifer recalled. “As we drove, her right arm started to go numb, and when we got there, her right leg became unusable.”

The emergency room staff rushed her to get a CT scan, and the doctor brought the news almost immediately. Madison had a tumor called anaplastic ependymoma on the left side of her brain. She was immediately flown by helicopter from Braselton to Children’s Healthcare of Atlanta. Because this type of tumor grows rapidly, Madison had surgery to remove it three days later.

An analysis of the tumor found it to be grade 3, meaning it is malignant and carries a 30% chance of recurrence. After healing from surgery, Madison had proton radiation for eight weeks. She will have to have regular MRIs of her brain and spinal cord for the rest of her life, but fortunately, her scans have been clear for five years.

“Madison has both physical and emotional scars,” Jennifer said. “Her treatment left her with PTSD, trauma, anxiety, and hallucinations caused by medication. Because of this, she wasn’t able to sleep alone until she got an emotional support dog named Toby. But our family believes we go through experiences such as this for a purpose, and Madison is finding hers.”

In fact, Madison founded a nonprofit called Purpose. Her goal is to comfort children in treatment by sending them a nightlight, a note of encouragement, and a stuffed dog that looks like her labradoodle. She is also finding purpose in her budding music career.

Madison has written 13 songs, including one entitled Superman, which is about being diagnosed with a brain tumor. While she sometimes finds this song disturbing to play because it brings back the trauma of her experience, she does want to tell her story to raise awareness and funds to help kids going through treatment.

“I won’t say God gave me cancer for a reason,” Madison said. “But I will say God brought me through cancer being mostly whole in a way that many children aren’t. I have a purpose.”

Madison is uniquely talented, and the world is starting to take notice. You can listen to her sing on Instagram. Big things are ahead for this amazing young lady.

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.