Jamela, 6, loves singing, dancing, and eating ice cream sandwiches. “She can make anyone smile and is always happy. She’s got quite the outgoing personality,” says Tangela, Jamela’s mom. When Jamela didn’t stop complaining about constant leg pain, Tangela knew something wasn’t right. “I took her to the pediatrician, to a near-by emergency room, and each time they told me maybe she’s just sore from ballet, it’s behavioral or it’s growing pains,” says Tangela. Something was telling Tangela that it wasn’t just soreness from Jamela’s dancing. She persisted to find answers.
Easter Sunday 2016, while at her grandmother’s house, Jamela’s leg pain became increasingly worse. Tangela brought her to Rush University’s Emergency Room. An ultrasound was performed and blood work taken and results found nothing out of the ordinary. “The next day at school her teacher called me and told me I needed to come get Jamela and take her back to the emergency room. That her pain was even worse. I needed answers,” says Tangela.
Jamela was admitted at Rush University and underwent an MRI where specialists discovered a tumor wrapped around her spinal cord, pressing on a nerve that was causing her leg pain. The following week Jamela had surgery to remove the tumor. “The first thing I thought when I heard the word ‘tumor’ was cancer,” says Tangela. “The week of waiting for results was the longest of my life. Literally, all the signs as I walked down the hospital hallway to find out the results of the tumor were telling me Jamela had cancer.”
Jamela was diagnosed with an atypical teratoid rhabdoid tumor (ATRT), a highly aggressive, rare brain tumor that can occur anywhere in the central nervous system including the spinal cord. Shortly after diagnosis, oncologists at Rush referred Jamela to Stewart Goldman, MD, Head of Cancer and Blood Disorders at Lurie Children’s. “I was so nervous to meet Dr. Goldman and the rest of the team but as soon as you meet him, you know things will be ok,” says Tangela. “Lurie Children’s has become our second family. We have hope.”
Jamela has undergone a year of intense chemotherapy- often coming to the hospital daily for treatments. Irene McKenzie, RN, MS, APN, Outpatient Neuro-Oncology Pediatric Nurse Practitioner, says, “Jamela’s wit, perseverance, and energy is what makes her so special.”
Recently, after more than a year of intense treatment, McKenzie joined Jamela in celebration as Jamela reached an enormous milestone in her journey- ringing the end of chemo bell. McKenzie says, “Throughout her treatment Jamela has taught me and many others, about the power of love, compassion, and tenacity. But there is one thing in particular that Jamela taught me during one of her many chemotherapy infusions and that was how to ‘nae nae.’ Now that, I will never forget!”
This summer Jamela and her family will represent Lurie Children’s on Capitol Hill as part of Children’s Hospital Association’s initiative Speak Now For Kids Family Advocacy Day (#SpeakNowForKids). Jamela will advocate for kids like her and for children’s health. She’ll share her story with legislators to illustrate why all children need children’s hospitals and how public policy can influence their access to health care.
New Potential Treatment for ATRT, Aggressive Brain Cancer in Children
Using state-of-the-art gene editing technology, scientists from Stanley Manne Children’s Research Institute at Lurie Children’s have discovered a promising target to treat atypical teratoid/rhabdoid tumor (AT/RT) – a highly aggressive and therapy resistant brain tumor that mostly occurs in infants. They found that these tumors’ growth and tendency to metastasize are regulated by a protein kinase called Polo-like kinase 4 (PLK4), which is increased in AT/RT. They also have demonstrated that an experimental drug, a PLK4 inhibitor, stopped tumor growth. Findings were published in Pediatric Blood & Cancer. Click here to learn more about this research.