In February 2015 our 18-month-old daughter, Lejla (pronounced Layla), was diagnosed with a “rare” inoperable brain tumor. The actual diagnosis is Grade III Diffuse Intrinsic Pontine Glioma (DIPG) which generally is a cancer seen in children between the age of 7-9 (depending on which medical info your reading). We have since learned that this is one of the hardest to treat cancer’s because of the blood-brain barrier (BBB) making it nearly impossible for traditional drugs such as chemo to get to the tumor itself. The tumor is within the pons area of the brainstem which controls all of your body’s vital functions, the BBB rids of as many toxins naturally as a defense mechanism to protect itself. The tumor is inoperable because operating on a child (or adult) in that area of the brain could cause more harm than good. Lejla will undergo 6 weeks of radiation (Mon-Fri) and Chemo every 14 days. The options for getting into a trial are very limited because she is so young, there are many factors that she needs to meet in order to qualify for the ones she can do, and also, the purpose of a trial is to find a new standard treatment within the average range of affected children and she is under age for many of the trials.
DIPG is very aggressive and the prognosis is 10-18 months average with standard treatment. The survival rate is less than 2% and of that 2% it is believed that those patients were misdiagnosed. It is not always an option to get an actual tissue biopsy of the tumor because of its location and is often times diagnosed via MRI. Lejla was lucky to have had a successful tissue biopsy and have 6 samples removed to be sent off for study, unfortunately, a misdiagnosis is not in our cards.
Some of the symptoms of the tumor that Lejla experiences is facial paralysis on her right side and partial paralysis of her left hand and left foot, all of which are having some relief due to radiation treatments. Lejla was starting to walk when she started to regress in her motor skills. Lejla also has lost her ability to form words, she was just learning how to talk before the tumor started to grow and that too was taken away from her. We have introduced some sign language to help her communicate with us, but we hope with the radiation we can get some of her words back.
Lejla is the most adorable, easy going, loving little girl. She was our “surprise” baby that we could never imagine not being here. She loves to see new things, play with her big brother Jaden and big sister Mikenna and have fun being the little sister getting into all of their stuff. Lejla loves anything soft that she can lay her head on or kiss (our way of knowing she likes something), anything pink, animals (especially her chickens), swings, Doc McStuffins and Princess Sofia. We are hoping for a miracle from God to give us our little girl back and grant us the gift of time and health. We know everything happens for a reason and we don’t know what the purpose is right now, but it will show itself when it is the right time. We are hopeful that the time we are given whether short or long, it will be memorable and happy and we will be able to give Lejla as many experiences as possible.
Currently Lejla is undergoing a vaccine trial at the Children’s Hospital of The University of Pittsburgh Medical Center where she receives two injections every 3 weeks for 9 injections and then every 6 weeks after the first round for up to 2 years with MRI’s every third vaccine. We are hopeful that the trial will provide her with a better quality of life and also help researchers find new and better treatment options for DIPG kids in the future. All we need is just one big break through to get things rolling and we are hoping that this is the one. Our kids and the families and care teams for these kids deserve a better chance at survival.
Learn more about Lejla at: https://www.facebook.com/prayforlejla