"Awareness" is a loaded word. It subtly suggests to us that we might need to open our eyes a little wider, primarily when it comes to issues that may have slipped beneath our radar. There's Alcohol Awareness Month, Stress Awareness Month, Cyber Security Awareness Month -- all issues that we need to be aware of. (Well, I did see Awareness Awareness Month on the web -- that may be one too many.)
This month is personal to a lot of us because it's devoted to Pediatric Cancer Awareness. I'm more than a little attuned to this subject: my father founded St. Jude Children's Research Hospital more than half a century ago, so I grew up keenly aware of the urgent fight to save girls and boys from the deadly ravages of cancer. And I'm always inspired by the astonishing medical advances at St. Jude that continue to give us promise in this fight.
At St. Jude, doctors and researchers work hand-in-hand not only to cure sick kids, but to find out what makes them sick. Every day, they are exploring newer and bolder frontiers -- from identifying the genetics that gives rise to some of the world's deadliest childhood cancers, to perfecting stem cell and bone marrow transplant protocols.
These efforts are heroic -- but the true heroes in this battle are the kids themselves. Over the years, I have had the honor of meeting thousands of them, and their courage and spirit never cease to give me hope. So this Pediatric Cancer Awareness Month, I thought I'd introduce you to a few of them, because they are what progress looks like.
Like five-year-old Aaron from Virginia, whose deadly brain tumor (medulloblastoma) rendered him unable to walk and talk. But thanks to treatments at St. Jude -- which boasts the largest research-based pediatric brain tumor research program in the country -- Aaron no longer shows evidence of the disease. Says his dad, Scott, a U.S. Navy man formerly stationed in the Persian Gulf: "Aaron is definitely my hero."
Or eight-year-old Alexis from Missouri, whose fight against neuroblastoma (a cancer that forms in the nerve tissue) began when she was just two. Enrolled in a cutting-edge trial for children with her illness -- a treatment protocol that includes cell transplants -- she has begun to show real progress. And most touching of all, her transplant is coming from her greatest champion in her fight: her own mom.
And then there's Asa, a nine-year-old old animal lover from Pennsylvania, Asa developed a mole on his chin two years ago, which was diagnosed as melanoma, a cancer that is uncommon in children. But battling the unknown is one of the hallmarks of St. Jude; and after undergoing a comprehensive treatment -- including lymph node dissection, an immunotherapy protocol and intravenous treatment -- Asa has returned home with his family to do what he loves best: caring for his pet fish and riding his pony.
I hope you'll take a moment to meet these three children and some of the other girls and boys of St. Jude by clicking on the slide show below.
This is what progress looks like -- and awareness begins with you.
Also, please read these wonderful posts from St. Jude parents:
<strong>6 years old Texas medulloblastoma</strong> Tyler had always been an active, social child, but in March 2010, his parents, Jennifer and Thomas, noted something was wrong. Over a three-week span, Tyler’s energy had gone down, he vomited on occasion and he began to lose his balance. When Tyler’s grandmother remarked one day that Tyler just didn’t seem like himself, his mom was propelled into action. “That’s all it took,” Jennifer said. “One other person noticing what I had noticed.” They took Tyler to the emergency room. There, a CT scan revealed a golf ball-sized mass in his brain, a rare and aggressive tumor known as desmoplastic medulloblastoma. Tyler underwent surgery to successfully remove the tumor. Afterwards, Tyler’s doctors referred him to St. Jude Children’s Research Hospital® for his continuing care, and St. Jude was able to type Tyler’s tumor—which made them better able to calibrate his treatment. Because Tyler’s subtype of medulloblastoma had a good prognosis, St. Jude doctors knew he would not need to undergo a bone marrow transplant or radiation therapy. He would also be able to receive a lower dose of chemotherapy. Jennifer and Thomas were grateful that Tyler’s treatment would be less harsh at St. Jude. At St. Jude, Tyler underwent six months of intravenous chemotherapy. Upon returning home in October 2010, Tyler continued treatment with six more months of daily oral chemotherapy. Tyler responded well to treatment, and today he is cancer free and back to his old self – full of energy and adventure. He loves Star Wars, Lego’s and superheroes, and returns to St. Jude regularly for scans.
<strong>1 year old China ependymoma </strong> In January 2013, Lynda and her husband, Alex, moved with their 11-month-old, twin daughters to China, after the company they work for opened an office in Beijing. “They girls have always been healthy,” Lynda said. That’s why, when Chloe began to tilt her head to the left, Lynda didn’t think much of it. But when the girls’ nanny noticed it too, Lynda and Alex began to compare the girls side by side. Sure enough, when the girls were sitting next to one another, Hanna would look straight at the camera, but Chloe’s head tilted. Lynda and Alex took Chloe to the doctor, who said that perhaps Chloe was sleeping funny and her neck muscles were weak. Five more doctors told them it was nothing. “I thought, no, no, I don’t think so, I think there’s something,” Lynda said. Frustrated by the feedback they were receiving in China, Lynda and Alex, who had a two week trip to the States planned in April, resolved to take Chloe to her pediatrician at home. Within days of landing in the States, Lynda and Chloe were at the doctor’s office, undergoing tests. “I really thought it was going to be nothing,” Lynda said. However, the tests revealed Chloe suffered from a type of brain tumor called ependymoma. She underwent surgery to remove the tumor, but the doctors weren’t sure there was much more they could do for Chloe. While she recovered, Lynda and Alex decided what to do next. “There had to be someplace that could help Chloe,” Lynda said. Lynda saw a St. Jude Children’s Research Hospital® program on the television. “As soon as I saw St. Jude, I told Alex that’s where we’re going,” she said. Alex’s sister, who is in the medical field, agreed. St. Jude is where doctors send their toughest cases because St. Jude has the world’s best survival rates for childhood cancers like leukemias and brain tumors. At St. Jude, Chloe underwent two additional brain surgeries to remove tumor growth. She then started chemotherapy. Chloe’s next set of scans will determine if she will continue chemotherapy or begin radiation therapy. Today, Chloe is doing well. Even though she misses her sister and dad, she loves to talk to them via Skype. “She smiles and laughs and waves to them when we call,” Lynda said. “It’s like we’re not really so far apart.”
<strong>1 year old Came to St. Jude from Wisconsin; now his family resides in Tennessee glioblastoma multiforme </strong> In May 2012, Apollos was 4 weeks old, and he was already trying to roll over and sit up. He laughed and smiled when he saw his mother. He was always happy. But then one morning, Apollos woke up screaming and crying. He was inconsolable. His mother took him to the emergency room at their local hospital in Wisconsin, where doctors said the baby had colic and sent them home. When Apollos’ appetite disappeared and his legs began to shake, his mother took him back to the emergency room. There, a CT scan revealed a mass on his brain. Apollos underwent two brain surgeries before doctors determined the mass was a rare tumor called glioblastoma multiforme. His mother was frantic. “We were told he had six to nine months to live." Of all the hospitals Apollos’ mom consulted, St. Jude Children’s Research Hospital® alone held out hope for a cure. At St. Jude, tests revealed Apollos’ tumor had started to grow back. He underwent surgery to remove tumor growth and began 12 months of chemotherapy. Apollos’ first MRI post-treatment showed no tumor growth. Apollos’ mother is thankful for the care her son has received. “No matter what door you come through at St. Jude, everyone you meet is so loving, kind and compassionate,” she said. “It helps me on this journey to see how happy he is. Apollos is excited to see his doctors and nurses every day. We both are.”
<strong>10 years old Arizona pleomorphic xantroastrocytoma (PXA, brain tumor) </strong> Juan enjoys school, particularly his science and math classes. He likes hanging out with his mom, Amelia, and his little brother Javier. They go to the swimming pool, play board games and watch movies together. But last July, Amelia’s life turned upside down when Juan suddenly fell ill. He lost his appetite and had a constant headache. An MRI revealed Juan suffered from a brain tumor. He underwent emergency surgery to remove the tumor, but since he did not have health insurance, Amelia worried she wouldn’t be able to get him the care he needed. Amelia’s sister urged her to look into St. Jude Children’s Research Hospital®, where no child is ever turned away because of a family’s inability to pay. Juan and his mother arrived at St. Jude in September. Javier stayed behind with family. At St. Jude, Juan underwent another surgery to remove tumor growth. A biopsy identified the tumor as a PXA, a rare brain tumor in the astrocytoma/glioma family. Juan’s treatment included 33 rounds of radiation therapy. Juan is now finished with treatment. He visits St. Jude every three months, and his latest set of scans showed no evidence of disease. He loves to do science experiments and play video games. He’s considered being everything from a zookeeper to a policeman to a teacher when he grows up. “Juan’s going to be a master of all trades,” Amelia said. “He can do anything he wants to do.”
<strong>4 years old New York diffuse intrinsic pontine glioma </strong> In September 2011, Morgan’s parents, Nikki and Adam, noticed her right eye would occasionally turn inward. They thought, at the very worst, Morgan might need glasses. When they learned Morgan actually suffered from a rare brain tumor called diffuse intrinsic pontine glioma (DIPG), they were devastated. Because of the tumor’s location on the brainstem, it is inoperable—and at this point in time, there is no known cure. With the help of Morgan’s pediatricians, Nikki and Adam researched treatment options, and they soon turned to St. Jude Children’s Research Hospital®. St. Jude researchers and clinicians have been teaming up to battle high-grade gliomas for years. In the past, the standard treatment for DIPG was radiation—that was all. But teams of St. Jude clinicians and laboratory scientists have been focusing their efforts on finding new and more effective treatments for DIPG and other high-grade gliomas. Investigators have been exploring different methods of killing the tumors. These techniques range from treatments that cut off the tumor’s blood supply to medications that block the receptors instructing brain tumor cells to divide and grow. At St. Jude, Morgan’s treatment included six weeks of radiation, as well as an oral clinical drug she takes daily. Morgan visits St. Jude regularly for check-ups and scans, and her latest MRI shows the tumor is stable. “She is among an extremely small percentage of children to be doing so well at this stage of her diagnosis,” Nikki said. Morgan is full of life and love. “Her strength and unrelenting spirit keeps us going every day,” Nikki said. Morgan loves spending time with her older sister, Hunter, and she recently had her first-ever ballet and tap recital. Morgan also excitedly began preschool this fall. “With the help of St. Jude, we hope Morgan will continue to defy the odds,” said Nikki.
<strong>12 years old South Carolina pineoblastoma</strong> When MJ told the admissions committee of an elite magnet school that he wanted to be a pediatric neurosurgeon so he could prevent and cure brain tumors, he had no idea that four days later he would experience his first headache. And that two weeks after that, a pediatric neurosurgeon would remove a tumor from MJ’s brain. When MJ’s headaches began in February of 2012, his parents, Lisa and Maurice Sr., immediately realized something was awry. Lisa, a university faculty member with a doctoral-level nursing degree, recognized that her son’s headaches did not fit the typical pattern for migraines. After two weeks, a CT scan indicated a malignant tumor called pineoblastoma lodged deep within MJ’s brain. After removing the mass, surgeons in South Carolina asked the couple where they wanted to take their son for further treatment. MJ’s family turned to St. Jude Children’s Research Hospital®. At St. Jude, MJ received six weeks of radiation therapy, followed by a break during which he returned home to deliver the commencement address at his elementary school. After returning to St. Jude, MJ underwent four rounds of chemotherapy. Each round was followed by an autologous stem cell transplant, which means he received his own stem cells and was able to recover relatively more quickly from chemotherapy. MJ finished treatment in October 2012. He visits St. Jude for regular checkups, and his most recent scans were clear. MJ likes to hang out with his friends, and will soon try out for his middle school basketball team. He’s in seventh grade and still has aspirations to be a pediatric neurosurgeon, now more than ever because he’ll know firsthand what his patients are going through.
<strong>14 years old Illinois acute myeloid leukemia</strong> In late 2010, when Barb and her husband, Lynn, first noticed their daughter Kate’s bruises, they assumed the competitive gymnast had simply been playing too hard. Kate then contracted a number of strange infections—one on her leg, one on her eye, and a third in her foot. In early 2011, a blood test revealed she had acute myeloid leukemia (AML). Her parents were devastated, but Kate was energized. No matter what, Kate said, she’d keep exercising. But then came a terrible complication. One month after Kate started chemotherapy in May 2011, she contracted a rare skin condition in her left leg called necrotizing faciitis. Kate was susceptible to it because of her lowered immunity from cancer treatment. She recovered, but in October 2011, the month she was scheduled for a bone marrow transplant, doctors found yet another infection—this time in her knee joint—and decided the leg would need to be amputated. Kate’s leg was removed on the same day as her bone marrow transplant. For several months, Kate was in remission, and despite her leg amputation, life resembled normal. She not only participated in CrossFit and gymnastics, she excelled. “She was amazing on the bars and swinging and catching, even without her leg,” said Barb. “We were ready to sign her up to compete in gymnastics when she relapsed on Sept. 18, 2012.” A bone marrow transplant offered the only chance for a cure for Kate, but her first one had failed. This time, her parents wanted to find a hospital to offer something more than the typical treatment plan for AML. That search led them to St. Jude Children’s Research Hospital®. At St. Jude, Kate was given a drug to improve the odds for a successful transplant. “St. Jude put her on a trial drug designed to draw out all the bone marrow that might be hiding in her bone, so when the transplant took place, all the old bone marrow would be gone,” said Barb. Kate’s transplant, which used an unrelated donor’s bone marrow, took place Dec. 12, 2012. Her recovery has been amazing. “She was able to give a speech at her eighth grade graduation,” said Barb. “And she did 50 pull ups the other day. I can’t even do that.” Kate now works out four days a week. “She’s chomping at the bit to get back to gymnastics again,” said Barb. This fall, Kate began ninth grade like all the other kids. She is cancer free.
<strong>16 years old Canada acute lymphoblastic leukemia</strong> In 2008, 11-year-old Angie Lee was the top amateur gymnast in Alberta, Canada. She had dreams of making it all the way to the Olympics, but instead, cancer struck. Diagnosed with acute lymphoblastic leukemia in July 2008, Angie began a three-year treatment plan of chemotherapy at a hospital in her hometown. It pushed her cancer into remission but robbed her of her hair and strength. Still, Angie pushed herself, and by 2010, she was back on the gymnastics mat, determined to return to the sport she loved. In October 2010, Angie’s treatment ended, and her family celebrated with a huge party. Life was uneventful for several months after that, but in October 2011, the cancer came back. This time the stakes were even higher than before. The relapse meant it would be harder to cure Angie. The oncologist recommended a bone marrow transplant. If this harsh treatment didn’t kill her, it just might cure her. Angie’s dad, Stephen, is a family physician who originally hails from China, and he searched the globe for the very best hospital for his little girl. Again and again, the doctors he consulted recommended St. Jude Children’s Research Hospital®. St. Jude is doing groundbreaking work in the area of bone marrow transplantation, improving outcomes for its patients. In summer 2012, Angie found hope by watching the U.S. Olympic gymnasts win gold. On Sept. 27, 2012, she underwent a bone marrow transplant at St. Jude. It is saving her life.
<strong>5 years old Virginia medulloblastoma</strong> In August of 2012, an MRI revealed a mass on Aaron’s brain. The next two days were a flurry of activity as Scott, a lieutenant commander 04 in the US Navy who was stationed in the middle of the Persian Gulf, made his way back to his family. By the time he arrived stateside, and joined his wife, Elizabeth, Aaron had already undergone emergency surgery to remove the tumor. A biopsy of the tumor revealed it to be a medulloblastoma, so Aaron’s family turned to St. Jude Children’s Research Hospital®. His treatment included a second brain surgery, 31 rounds of radiation therapy and four rounds of chemotherapy. Scott was temporarily reassigned to a military base in Tennessee, and was able to stay with Aaron during the entirety of his treatment. “I feel blessed that I could here with him,” said Scott. “Aaron is definitely my hero.” Aaron recently finished treatment. He visits St. Jude for regular checkups, and his latest set of scans showed no evidence of disease. Scott looks forward to many more days spent playing with his son. “You can’t put the amount of thanks we have for St. Jude into words,” Scott said. “It’s the very best of the best.”
<strong>8 years old Missouri neuroblastoma</strong> Two-year-old Alexis had been running a fever at night. Then, she stopped walking. Her pediatrician ran tests. He told Alexis’s parents he didn’t think she had leukemia, but he wanted her to be seen at St. Jude Children’s Research Hospital® right away for further evaluation. Now 8 years old, Alexis has needed every bit of help St. Jude has given her in her fight against cancer over the past six years. Unfortunately, Alexis has neuroblastoma, a cancer that tends to return. And Alexis’ cancer has come back with a vengeance. And so the battle for this little girl’s survival that began that night when she was 2 years old has begun all over again at St. Jude. But at St. Jude, today we have more reason to hope for Alexis than we did even a few weeks ago. With help from our GMP facility, where St. Jude turns laboratory discoveries into lifesaving treatments, we recently opened a new clinical trial for children with neuroblastoma. Alexis was one of the first children accepted into this clinical trial. Alexis’s transplant is coming from someone who would give anything if it might help give Alexis a chance to live: Her own mother. Alexis still has a few more months to go on her new therapy, but scans show the treatment is already making progress against the disease.
<strong>9 years old Pennsylvania Melanoma</strong> In late 2011, when a mole appeared on Asa’s chin, his parents kept an eye on it. In early 2012, after the mole appeared to grow, Asa had an appointment with a dermatologist. A biopsy was done and Asa’s family waited uneasily for the results. Asa underwent surgery, during which the mole was removed, but the news wasn’t good. Not only was the mole melanoma, the cancer had also metastasized to Asa’s lymph nodes. “I was in shock,” said Asa’s mother, KB. Melanoma is rare in children. Through her research, KB quickly realized how unusual it is for young children to have melanoma. Asa’s family looked into St. Jude Children’s Research Hospital® and was impressed with the work being done there on pediatric melanoma. Asa and his family arrived at St. Jude in May 2012. He underwent a complete lymph node dissection, and is now on an immunotherapy treatment protocol. Asa underwent four weeks of intravenous treatment at St. Jude, and was then able to return home with his family. His continuing treatment includes weekly shots, which St. Jude nurses taught KB how to administer. Asa visits St. Jude every other month. His treatment is expected to last for 48 weeks. KB and her husband Rick are grateful for St. Jude. “St. Jude is amazing,” said KB. “The care here doesn’t cost anything, and Asa is getting the best treatment possible. Asa is never scared to come to St. Jude, he never dreads it.” Asa, who is in third grade, is a competitive gymnast. He also loves animals. He has two fish tanks in his bedroom, and Asa and his best friend each have a pony.
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