A high fever drove Emmy Waymire’s parents to take their 5-month-old to their pediatrician. After trying to figure out the source of the problem, a sonogram later revealed that one of her kidneys was enlarged. It was then that they learned a very long new word: nephroblastomatosis, or the presence of excess tissue within the kidney. This rare condition is often benign and not worrisome. But in some children, the condition is a pre-cursor to a Wilm’s tumor, which must be treated.

“We lived in Kansas at the time and the doctor told us there were only 19 other cases of this,” said Emmy’s father, Kevin. “She did a year of chemo and it shrunk by 50% by the time we moved to Florida. When we arrived, the doctors there immediately diagnosed her with a Wilm’s tumor.”

Their new doctor recommended removal of the kidney. That seemed very drastic to her parents who were originally advised removal could later cause the tumor to spread to her healthy kidney, so they sought a second opinion from an expert in Boston. What they learned there validated their decision to wait, but their new team felt removing the kidney had become the right course of treatment. The surgery took place in November of 2019. After she recovered, they came home and began her chemotherapy in Atlanta.

“Our doctors in Boston originally wanted us to stay there to do chemo,” Kevin said. “But logistically that would have been very hard for us to travel and stay so far away from home. It also would have been quite expensive!”

They’ve been coming to Children’s Healthcare of Atlanta ever since. She had weekly chemo infusions until mid-February. After that they made the trip to Atlanta once every three weeks. Her last chemotherapy treatment is scheduled for mid-May and they couldn’t be more excited!

Emmy will be a spunky three-year-old in July. Her father describes her as a girly-girl who likes tutus and frilly bows. But she also likes playing in the sand at the beach, building with blocks, and pestering her 4-year-old brother. And while they are almost finished with treatment, the pandemic has affected them in a few ways.

“For the most part, it hasn’t been that much of a change for us. We were already isolating ourselves and living in a bubble,” Kevin explained. “Our issues with the pandemic have had more to do with our jobs than Emmy’s health.”

Emmy’s mother, Ashleigh, is a nurse at an OBGYN clinic. She hasn’t worked very much this year because of Emmy’s treatment, but she recently started back. Kevin is a marriage and family therapist and registered play therapist. He recently had to close his practice because so many adults are not yet comfortable with telehealth.

“The hospital stays also became very different for us,” Kevin said. “Emmy has to be admitted and we are used to switching out to give each other a break while she’s there. But now only one parent can be with the child for the duration of their stay. I understand why. But it’s hard not being able to be with them.”

They also found out that she will not be able to have a traditional bell-ringing ceremony to mark the end of treatment. While they are disappointed, the Waymire’s plan to give Emmy a special celebration when they can. They’ll likely do it at home – which seems appropriate during this time of quarantine. But hopefully some of the restrictions will be over and they will be able to invite friends and family to join them to cheer Emmy on when she rings the bell!

 

Anna Thompson was scrolling through Facebook one evening when a particular post made her pause. The post showed the picture of a young man named James who was in dire need of a liver transplant. The situation struck a chord with Anna.

“When I read James’ mother’s words, my heart went out to her because I could feel her desperation,” Anna recalled. “It mentioned that his sister had tried to donate but was unable. The next thing I saw was that our blood types matched.”

At this point, most of us would feel great sympathy for the situation and keep scrolling. But not Anna. Her mother’s heart wouldn’t let her because she has felt that same desperation.

Anna’s oldest son, Lake, was non-stop motion and best described as “all boy”. Whether shooting basketball, wrestling his little brother, or playing with friends, he was constantly moving until he suddenly began to slow down and complain of exhaustion. Since that was so abnormal, Anna took him to his pediatrician who quickly sent them to the hospital where he was diagnosed with acute myeloid leukemia (AML). Lake reached remission quickly but relapsed a year later. After a few rounds of chemotherapy, he needed a bone marrow transplant, which proved to be a problem.

“When Lake was ready for his transplant, we couldn’t find a match,” Anna said. “His doctors were able to use donated cord blood, but we knew that wasn’t ideal. Still, it worked for a time.”

Lake surged for a year. He got to go to camp, enjoy a Disney cruise, play hard, and meet his new little sister. He even signed a one-day contract with the Atlanta Hawks. But all the while, his cancer had regrouped and became too much for his tired body. Lake passed away on May 1, 2015.

“We miss him like crazy,” Anna said. “We take comfort in knowing that he is now cancer-free and perfect once again. But when I read that post, it made me think of my boy. I will always wonder whether Lake would still be here today if we had found a perfect match for him.”

Anna didn’t hesitate. She reached out to James’ transplant team to start the screening process. Testing to ensure a correct match can take several months, but Anna and James found out she was a perfect match in February. Overjoyed, James’ mother, Janice, contacted Anna to thank her and they made plans to meet just before the surgery.

“His mother sent me their address and it turns out they live less than a mile away,” Anna shared. “They could have lived anywhere, and we were neighbors the whole time. Our families spent three hours together that Sunday and truly enjoyed the afternoon.”

James is a 22-year-old engineering student at Mercer who has a rare auto-immune disorder that attacked his liver. Like Lake’s cancer, this particular disorder is usually only found in people much older. He knew he would need a liver someday, but his quality of life was severely declining.

The transplant surgery took place on Valentine’s Day and was successful. Although recovery was difficult for both of them, Anna has no regrets about her decision.

“Surgery and recovery brought so much perspective to me,” Anna said. “When I started to hurt and feel a little sorry for myself, I realized that this is how Lake felt for more than three years and he still functioned and had a positive attitude. One of the biggest things I learned from Lake is that our life does not belong to us. It is meant to be shared to help others, inspire others, and love others. Lake did those things, so I’m doing my best to be just like him. I pray that this will inspire people to think of others more than themselves.”

And how does Janice feel about Anna?

“Anna is an angel,” Janice said. “It is overwhelming to receive such a gift – literally my child’s life. A lot of people offered sympathy and help, and many of our friends and family tested to see if they could donate. But Anna was the only one who said she could feel my desperation… because she had been there. While spending time with Anna and her family, I heard many heartfelt stories of Lake’s generous heart and ability to shine his inner light on others. Honestly, the Thompsons felt like family from that very first day we met, and I wish we had gotten the opportunity to meet Lake.”

Two days after surgery, James came to Anna’s room and he looked great. The jaundice that had been so noticeable just days before was gone. Anna and James have become friends with a special bond. She describes him as brilliant and very sweet, and she can’t wait to see what his future holds.

A future made possible by her mother’s heart.

 

 

**  Anna and her family fight cancer in Lake’s memory through a named fund called United for a CURE. Together with two other families, they work tirelessly to fund research that will end pediatric AML.

 

Remi is a tough little four-year-old who rarely sat still until a cancer diagnosis slowed her down. Her entire family had gotten bronchitis and her mother, Ashley, first attributed Remi’s exhaustion to the virus. But when she saw that Remi had bruises from head to toe, she knew something else was wrong.

“She and her brother roughhouse, so I thought maybe it was from playing too hard.” Ashley said. “But she was visiting a friend who called me and said that Remi’s lips were blue and her color was bad, so I took her to the emergency room.”

It was there that she discovered that bronchitis was the least of Remi’s issues. A blood test revealed her white blood cell count to be 144,000 where a healthy child’s count would be around 10,000. A doctor told Ashley that Remi had leukemia. Things unraveled quickly from there.

The day Remi was to come home, she screamed during a diaper change and her doctors found she had a pseudomonas infection. This prompted a surgery and a temporary ostomy to allow her body to pass waste. She needed transfusions to recover and since she had not had enough chemo to fight the blood cancer, her body started attacking itself. Remi’s organs started to shut down and she was put on a ventilator to help her breath.

“It was awful seeing her that way,” Ashley recalled. “She had to be taken off chemo to let her body recover. But amazingly, we found out she was in remission while she was still unconscious. She is my miracle baby.”

Ashley’s words proved true because to the surprise of her medical team, Remi was up and walking three days after she woke up! When she was well enough, she restarted her regular chemotherapy and was able to go home. She has had further complications, but when she gets knocked down, she seems to recover quickly.

Remi has a year left of her treatment. Her mom describes her as funky, sassy, and the self-proclaimed boss of the house. She loves taking care of her brother and doing anything outside. Just before the pandemic swept through, Remi had a tough time. She tested negative for COVID-19 but did have to contend with the flu and bacterial pneumonia. During this time her mother has had to make difficult choices.

As the manager of a local drug store, Ashley’s job is considered essential. Additionally, the county in which she lives has barely been touched. So she has continued to work and balance Remi’s treatment and home life.

 

“I am so fortunate that my parents can keep Remi and her brother fulltime. I don’t know what I’d do without them,” Ashley said. “After work, I’ll come home to shower and change, and then go have dinner at their house and visit until bedtime. I also work longer shifts so I can take three consecutive days off and spend more time with them.”

If the pandemic worsens, Ashley will have to make a choice to continue that pattern or take a leave of absence.

“It would hurt financially, but it isn’t really a decision,” Ashley said. “I’ll take a leave of absence if it gets bad in Jasper County. I can always find another job and replace my stuff. I can’t replace Remi.”

When Schuylar was a junior in high school, she had a health scare that threatened to derail her future. But this recent college graduate wouldn’t let anything stand in her way, including a fight with cancer.

One night, Schuylar turned her head and her mother noticed a bump on her neck. Since it didn’t hurt, they didn’t think much of it until later in the year she began to feel sluggish and fatigued. Her doctor thought it might be her wisdom teeth coming in, but her mother felt like something else was to blame and pushed for more tests. She was right. A biopsy revealed that Schuylar had Hodgkin’s lymphoma, and the bump on her neck was a swollen lymph node.

“I remember the hospital elevator doors opened and I saw the sign that said, Aflac Cancer and Blood Disorder Center,” Schuylar recalled. “I turned to my mom and said, ‘why are we here?’ I cried when they told me.”

Schuylar began the standard protocol which consisted of four rounds of chemotherapy and lasted over three months. She planned to shave her head, but when she went to the beautician, all of her hair fell out in the sink.

“It didn’t really settle in that I had cancer until I lost my hair,” she said. “I was just going through the motions until I was bald. I know three months of treatment isn’t a long time, but it felt like forever to me. I was assigned a homebound teacher for school and I really pushed myself too hard because I didn’t want to feel weak or incapable.”

Schuylar had bouts with nausea and bone pain during her treatment. She also got to go to Camp Sunshine, which was a wonderful break where she could be with people who understood what was going on with her.

Her treatment ended early in her senior year and her hair started to come back. Because she missed so many days, her grades suffered. But everyone at Luella High in Locust Grove worked with her and she got back on track. Schuylar was adamant about graduating with her class in 2014 – and she did!

“I had some tough moments after treatment was over,” she said. “My school’s principal, Harry Kustik, was a great help to me and my family during the whole thing. He asked me to come and share my story with his soccer team and it really helped me to talk to those girls about overcoming cancer.”

After high school, Schuylar began college at Georgia Southern University, but returned home too attend college in the local area. While at home, Schuylar and her mother connected with newly diagnosed patients as a way to encourage them. She has continued to express a desire to share her story and serve as a visual of hope for families in the fight against cancer.

Her cancer experience pushed her to work toward a degree in healthcare. She began in nursing, but decided that wasn’t the path for her and attained a Bachelor of Health Science from Clayton State University. Two internships and several volunteer hours helped her to decide she would like to work at a place like the CDC where she can review and implement public health programs.

Schuylar is nearly seven years cancer-free and knows that while it was difficult, her cancer journey also helped her in many ways.

“My cancer experience made me stronger and set my focus,” she said. “I want to encourage people who are going through treatment to not let a cancer diagnosis hold them back. On the other hand, sitting down to take a breath doesn’t make you weak. I should have rested more. I got caught up in wanting to be the old me all the time. But after it was over, I came out of it as a better me!”

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.