When Carter was 18 months old, he began to get skinnier. Because he was very active and the time was right for him to start losing baby fat, no one thought much of it. But as he grew taller, his mother, Erin, became concerned. No matter how much he ate, he still lost weight.

“He was eating like a horse and you could see his ribs,” she recalled. “About a month after his well check-up, I stopped in at the pediatrician’s office and asked them to weigh him. He had lost a pound in that month!”

The doctor shared her concern. Carter weighed 18 pounds and a healthy child his age should weigh around 25. Over the next few months Carter would visit several specialists and have tests for disorders such as celiac disease and cystic fibrosis. He began to lose strength and his typically active pace began to slow dramatically. When test after test came back negative, he was admitted to the hospital where an endocrinologist discovered he had diencephalic syndrome – a disorder that speeds up the metabolism.

“What we didn’t know was that the syndrome they found is usually caused by a tumor,” said Erin. “They did a CT scan and sat us down to tell us he had brain tumor. Being told that your child has a tumor was the scariest thing I’ve ever heard.”

Carter underwent a biopsy that revealed it to be a pilocytic astrocytoma – a slow-growing, benign tumor. His doctors did not feel it was worth the risk of brain surgery to try to remove it, so they decided to monitor it instead. But what was supposed to be a slow-growing tumor grew larger in just a few months. So a surgery was scheduled to remove as much as possible.

“The surgery lasted twelve hours,” Erin said. “It was excruciating. Other parents came and went from the waiting room all day while we sat there until they finally came out and told us that the surgery was finished.”

The surgeon said he was happy with the results. He was able to remove roughly 40% of the tumor and within a week, Carter was walking, smiling, and playing at home. But his battle was far from over. A follow-up MRI showed that the tumor had spread down his spine.

“That was a defeating moment,” said Erin. “He’d been through so much already and this type of tumor isn’t supposed to grow or spread.”

Carter stayed at home for a month to let his body heal and then began chemotherapy which made him very sick. After seven rounds, he developed a brain bleed that forced surgeons to put in a shunt to relieve pressure should it happen again. Since that time, his parents have taken him from his home in Savannah to Atlanta and Washington DC for treatment. He has been on clinical trials, and currently receives a combination of three chemo drugs every week.

“Stability is the best-case scenario,” explained Erin. “We desperately wanted it to shrink and were disappointed time after time. At this point his tumor has been stable for almost nine months. Now that we’ve adjusted our expectations, we are happy with that result!”

And Carter is finally doing well. He is back to being very active and has even gained weight! He loves Mickey Mouse and following his older brother, Cade, all over the place. His family feels that it’s important to share his cancer journey and when he slows down, Carter will almost always smile for the camera.

“We want to share Carter’s journey for two reasons,” said Erin. “We want others to know the realities of what childhood cancer families deal with. We also hope that Carter’s joy throughout his treatment will brighten someone’s day.”

A fall that never seemed to get better started seven-year-old Landon off on a journey that took an unexpected turn.

“He just slipped and fell,” recalled his mother, Jessica. “It didn’t seem like much. But he hurt his back and it never got better. When he refused to go up stairs and was screaming in pain, we took him to get an X-ray.”

The X-ray didn’t reveal any broken bones, but later an MRI would show that Landon had leukemia. That was two years ago and because Landon would be immunocompromised during his treatment, his family had to learn all about handwashing, surface cleaning, and social distancing.

Some of the basic recommendations to keep leukemia patients safe from germs include:

• frequent dusting and vacuuming
• weekly cleaning of kitchen and bathroom sinks, tubs, shower area, and toilets with a cleaner that kills mildew.
• All kitchen appliances, including the inside of the refrigerator and counter tops, should be thoroughly cleaned with a commercial cleaning soap or solution.
• Air conditioning filters should be removed and cleaned or replaced monthly.

“We are constantly cleaning our house,” Jessica explained. “Landon’s treatment is three years – and he is immunocompromised that entire time!”

Landon reached remission in thirty days and his treatment has gone according to plan. The cold and flu season usually puts him on a health rollercoaster. He has been in admitted to the hospital a few times in the spring seasons and typically rebounds by summer. He was enjoying soccer this year and was very disappointed that the COVID-19 pandemic forced its cancellation, but he understands that he needs to stay well.

“Landon is why I social distance,” said Jessica. “Because of his cancer, he’s been forced to be in quarantine and at times he has had to stay away from friends and family. If he can do it for three years, we can all do it for a few weeks.”

The COVID-19 pandemic has forced all of us to step back and make hard choices. But what would you do if your child was in treatment for cancer and you worked in a hospital that was starting to admit patients suffering from the virus? That’s the decision the Walker family had to make.

Payton, or Pjo, as he likes to be called, is a whirlwind of action and fun. He could often be found climbing up a tree in his yard until a cancer diagnosis slowed him down. In April 2019, seven-year-old Pjo was diagnosed with neuroblastoma, a childhood cancer of the nervous system. He started aggressive chemotherapy right away and had surgery to remove the large mass. His treatment path has been difficult, but he has maintained a positive attitude through the whole thing.

Pjo was all set to be the face of CURE Madness before the NCAA tournament was cancelled. Now he is the face of the balancing act between cancer treatment and COVID-19. His father, Payton, is a plumber, and his current job site is at Grady Hospital. Because Pjo is immunocompromised and completely vulnerable to the virus, his family was forced to make a very hard choice.

“This was a real reality check,” said Pjo’s mother, Deidra. “We were both really hoping they would shut the job site down, but they didn’t. We are at a place where we cannot take any chances. So Payton is taking a layoff.”

Even in the best of times, many families struggle financially during childhood cancer treatment. Between increased medical expenses, frequent travel costs, and loss of time at work to be a caregiver, finances can quickly become strained. The pandemic has forced a new, even tougher reality for some parents of children fighting cancer. During treatment, cancer patients are so vulnerable that they would have no way to fight off such a strong virus, and difficult decisions have to be made. Decisions of life over livelihood.

But Deidra doesn’t doubt their decision one bit.

“Pjo’s body has been through so much in the past a year,” explained Deirda. “It would be irresponsible of us to continue to expose him. If everyone does their part and stays home, maybe we can stop this virus and Payton can go back to work.”

Pjo is starting a new form of treatment called immunotherapy that hopefully will finish off his cancer for good. He will be severely immunocompromised for months to come, but his whole family will do whatever it takes to keep him safe. Their difficult decision proves that.