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In February 2015 our 18-month-old daughter, Lejla, 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 underwent 6 weeks of radiation (Mon-Fri) and Chemo every 14 days. Some of the symptoms of the tumor that Lejla experienced were facial paralysis on her right side and partial paralysis of her left hand and left foot, all of which were having some relief due to radiation treatments. Lejla was starting to walk when she started to regress in her motor skills. Lejla also 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 introduced some sign language to help her communicate with us, but always hoped with the radiation we would get some of her words back.
Lejla was the most adorable, easy going, loving little girl. She was our "surprise" baby that we could never imagine not being here. She loved 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 loved anything soft that she could lay her head on or kiss (our way of knowing she liked something), anything pink, animals (especially her chickens), swings, Doc McStuffins and Princess Sofia. We hoped 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 know that her time with us was memorable and happy and that we gave Lejla as many experiences as possible.
Lejla was involved in a Vaccine Trial at the Children’s Hospital of Pittsburgh at the University of Pittsburgh Medical Center. She remained stable with no tumor growth, was walking and trying to form words, she was exceeding both our expectations and her teams expectations of what she would be able to do after chemotherapy and radiation to the brain.
On August 23rd, Lejla became our guardian angel. She was the most precious piece to our family unit. She taught us so much & was an incredibly brave soul. She was amazing, resilient and will always be our hero.