Every two minutes, a child somewhere in the world is diagnosed with cancer.
In the United States, pediatric cancer is the leading cause of death by disease for children past infancy. The National Cancer Institute estimates that 10,590 new cases will be diagnosed this year among children from birth to age 14. Yet only about 4 percent of federal funding for cancer research is dedicated to childhood cancers.
For this Childhood Cancer Awareness Month, we reached out to families who have been touched by pediatric cancer and asked them to share their children’s stories.
Keep scrolling to bear witness to 16 cancer fighters and their tales of strength and courage.
1Jen Edwards“Our daughter, Ella Edwards, was diagnosed on her ninth birthday on April 28, 2017, with a rare pediatric bone cancer, Ewing’s sarcoma. Originally we thought she had a stomach bug, but were devastated to learn this seemingly healthy child, who never even needed an antibiotic in her life, now had a 10-cm tumor at the base of her spine that had metastasized to her lungs. She bravely endured 14 rounds of chemotherapy, six weeks of proton radiation to her lower spine, and two weeks of whole lung radiation over the course of nine months. Despite the horrendous toll it took on her body, she always held a bright smile. She’s one of five children, and in October of this year she will be nine months NED (no evidence of disease)!”
2Kori McDaniel“Our youngest son, Ellis, 3, was diagnosed with bilateral retinoblastoma when he was 3.5 months old. We receive treatment at St. Jude Hospital in Memphis. Ellis completed six rounds of chemo and numerous laser treatments. We were able to save both eyes, although he has extremely limited vision in his right eye. He has not ever let this slow him down! He keeps up with big brother and sister without skipping a beat. This photo was taken last week during a routine eye checkup. Very happy to report that last exam was clear and he has been stable for over one year!”
3KaylanStrong DIPG“Kaylan ‘Momi Girl’ Haywood was 11 years old. She was diagnosed on Feb. 16, 2018, with DIPG. After her diagnosis she said, ‘God has got this, mom, he is going to use it for his glory.’ She fought hard for six months and shared her love for God and faith in his word with everyone. She never gave up hope in God’s healing. She had a smile that lit up the room. She smiled for every picture that was taken.
“On Aug. 22, 2018, she got her heavenly healing. The night before she passed she sang praises to God through music. Even though her breathing was so difficult, she sang with all her heart. She was strong, courageous, faithful, loving, and selfless. She was more concerned about others making it to heaven so that she would see them again one day.”
4Dana Wineke“I am dedicated to spreading awareness about this awful disease that affected our family. This is Cade at 2 years old, going through treatment for brain cancer. He is now 4 and cancer free. Although he looks like a typical cancer patient in this photo (bald head, sunken eyes, rail thin, port sticking out, bruises), he is still smiling. He gave us so much strength during that time. He has always been the happiest kid, and his smiles helped us through the scary moments during his treatment and multiple surgeries.”
5Brittany Sampley“This is Jesse Sampley. He was diagnosed with osteosarcoma in October 2017 after being hit with a football helmet in the knee. He had a rotationplasty surgery in January 2018.”
6Jennie Pilon“In January 2016 my world was rocked as my son was diagnosed with a rare form of childhood cancer. He had surgery to remove his affected kidney (malignant rhabdoid tumor of the kidney/atypical rhabdoid tumor), but it had metastasized to his lymph nodes in his spine. He endured intense radiation and chemotherapy but after 32 infusions, it was determined to have reoccurred. His already slim chance of survival (5 to 15 percent) dwindled to nothing as doctors told me once reoccurrence happened, this cancer has no known cure. We looked into trials but sadly were rejected due to the severity and aggressive nature of his cancer.
“He passed away May 20 at 3:55 a.m. in my arms, after having not been able to hold him for almost a month due to the extreme pain it caused. A month and three days later his grandfather joined him after fighting pancreatic cancer.”
7Lacey Davis“Alleyah was diagnosed with Stage II Wilms tumor on Sept. 8, 2015, at 4 years old after a month of unexplained fevers, stomach pain, vomiting, and urinary problems. Within 48 hours of diagnosis, she underwent a lifesaving 12-hour surgery to remove her tumor and right kidney. She had seven months of chemotherapy before being declared cancer free. It’s been 2.5 years.
“This cancer journey has taken her kidney, her childhood, and her innocence. It stripped our family of financial stability. However, we rejoice now in the things cancer can’t take. We live and love with purpose. We cherish our time with family and friends, and we fight fiercely for what’s important to us. Alleyah is an advocate for children fighting cancer and is proud to share her journey.”
8Heather Howell“Charley was born on Aug. 13, 2013. She was healthy and beautiful with 10 fingers and 10 toes. Charley was the happiest baby I’d ever seen. She was perfect! At 2 months old, I started to think she was a little on the small side. I asked her doctor and he said that she was fine, she may just be a small child. At 3 months old, I was even more concerned and took her back to the doctor’s office, and in fact she had lost weight from her last visit. We then started trying to figure out what was causing her weight loss.
“After many tests and scans, they found a mass in her brain. We were flown to Children’s of Alabama in Birmingham. There they did a biopsy and on Dec. 3, 2013, Charley was diagnosed with brain cancer, an inoperable brain tumor — pilocytic astrocytoma — and an extremely rare neurological disorder called diencephalic syndrome. Diencephalic syndrome is usually caused by a brain tumor such as a low-grade glioma or astrocytoma.
“A year into treatment, Charley’s tumor had grown so much that she needed brain surgery to remove some of the tumor to save her life. That surgery was about 13 hours long. They were able to remove 60 percent of the tumor, which was more than they had expected. Charley completely lost her sight in that surgery, but it saved her life and that’s what matters most. It hasn’t slowed her down or bothered her at all.
“Charley has had a total of 13 surgeries — seven of those were brain surgery and two of those were major brain surgery. She has been under anesthesia 32 times and counting. At 5 years old, she has been on chemo treatment all but six months of her entire life. On her fifth birthday, she received her 129th dose of chemo.
“Charley is a special little girl not only because of how strong and resilient she is but because of how much love and happiness she spreads. She has made more of an impact on the world in her five years than the average person does in an entire lifetime. Her over-the-top bubbly personality is infectious. She is truly one of a kind, and I am so proud to be her mother.”
9Jojo Fights Leukemia“Josiah was diagnosed with ALL [acute lymphoblastic leukemia] in December 2016, when he was 5 years old. We knew something was wrong in the summer because he was complaining about chest pains and had unexplained fevers. He is expected to finish chemotherapy in summer 2020. The best way to describe his journey is a roller coaster ride. He has enjoyed the highs and endured the lows. He is a great young boy who works to help other kids with cancer fight.”
10Sue Matthews“My daughter, Taylor, was diagnosed with pediatric cancer at 11 years old and we lost her at 16. My heart is broken into a million pieces, but I have survived by living the life she would want me to, a life filled with happiness and love. She lived in the moment, making the best of every situation, and lived a life where she felt all you need is love. Her favorite saying was, ‘Life sucks. Wear a helmet.’ So when you are faced with a crisis, remember Taylor’s words and put a smile on your face in memory of my daughter.”
11Guido Trujillo“This is Dylan. He was diagnosed at 5 months old with high-risk infant acute lymphoblastic leukemia. Childhood cancer is a family diagnosis. Treatments are barbaric and outdated, and kids have to spend months in the hospital. Did you know our government only allots 3.8 percent of the total national budget [for cancer research] to childhood cancer research? Dylan is worth more than 3.8 percent.”
12Tierra McCullah“Isabella, or Izzy as we all call her, was diagnosed with Stage 4 neuroblastoma on April 13 after two months of different diagnoses. Since then, she has gone through six rounds of chemotherapy, countless transfusions, and is currently going through her seventh round of chemo, which is a stem cell transplant round. Through it all, she still remains beautiful, strong, fierce, loving and silly. She is still a 3-year-old little girl but has somehow become so mature and has been a hero and inspiration to many! She will do eight rounds of chemotherapy total and six months of immunotherapy, and we are confident that she will kick this ugly cancer to the curb!”
13Ellie Poole Ewoldt“He was given six months to live six years ago when he was diagnosed with a malignant brain tumor. He struggles and lives even now, but this is still a favorite picture of mine. The last day of radiation, I held him close as he passed into unconsciousness in my arms, whispering, ‘I’m so brave.'”
14Help Tinka Fight Leukemia“After almost four years of fighting, Tinka’s fight is coming to an end. On Friday, Sept. 7, 2018, we found out that her leukemia has come back yet again. Unfortunately, her body is not strong enough to fight anymore. She is beginning her transition, and we are making all her dreams come true.”
15Abby Breyfogle“My identical twins were diagnosed with acute myeloid leukemia at 3 months old. We lived in one hospital room for 129 days and endured four rounds of chemo. After 17 months of remission, one twin, Kendal, relapsed. She endured two more rounds of chemo and a bone marrow transplant. It ultimately failed and Kendal died from AML at 2 years, 3 months old. Her identical twin sister, Kenedi, is celebrating three years of remission this month. The twins have an older sister and a younger brother.
“Having two children with childhood cancer has been the most difficult road I’ve walked in my life. But we have always tried to find the joy, even during dark days. And that’s one thing childhood cancer has taught me, one thing losing a child has taught our family: Always find the joy. We are not promised tomorrow. Find the joy in every moment you can.”
16Natalie Brooke Ferrell“This is my nephew, Nathan. Rhabdomyosarcoma nearly took him away at 3 months old. Childhood cancer meant living each day attached to chemo pumps, radiation therapies, multiple surgeries (even after the cancer was gone). It means lifelong complications for Nathan, including paralysis from his tumor and being unable to use the bathroom without medical intervention. Cancer made his ‘normal’ being poked and prodded with needles and pumped full of chemicals just to stay alive. Cancer did damage, but the treatment did, too.
“It also meant meeting other kids who wouldn’t be so fortunate to be ‘cured.’ It was days of crying, worrying and years of prayers. But it also meant hope, dreams, and joy when he made it out alive. Cancer is something NO child should have to face.”
BEFORE YOU GO
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