NEVAEH: Forever AGE 6

Diffuse Intrinsic Pontine Glioma (DIPG)

Nevaeh (Navy) Medeiros was diagnosed with DIPG a rare and very aggressive and fatal type of brain tumor on June 9th 2017. She was given 9-12 months from diagnosis to live. Navy completed 30 rounds of radiation as that was all they could offer her for treatment. Navy completed an MRI in September after her radiation when we were told her tumor had shrunk a little bit so there was no progression. She was doing very well with no symptoms for a couple of months. In December, she completed another MRI where it showed some progression. Then in January we did another MRI when the symptoms returned in full force and she lost her left eye; it had shut and she was unable to open it as the tumor was pressing on her 7th cranial nerve in her head. We spoke about doing all the things we wanted to do with Nevaeh before things got much worse, so we decided at that time we would take our Wish trip to Disney and Give Kids the World and when we returned we would go ahead with another round of Radiation. So we took our wish trip which was truly amazing. When we returned Nevaeh did a Cat Scan and another MRI. The doctor gave us the news that Radiation was not an option as the swelling would probably take her life within a couple of days of starting the treatment. We as a family decided that we were not going to go ahead with the treatment this time. So we planned Navy's 7th Birthday party not knowing what the future held for us and spent all our time giving Navy our full undivided attention. Navy went and visited her school and handed out Valentines cards and spent the day playing with her friends and doing what she loved doing which was Eating.... Things Changed very quickly Navy lost many of her Motor functions in such a short time. She lost the ability to walk, talk, and open her left eye. Navy was rushed to hospital on March 5th when she was having severe difficulty breathing. Her breathing was very raspy. We were released from hospital with some conditions. We needed an oxygen machine, a suction machine and a morphine pump. Our main goal was to keep Navy comfortable. Then on March 6th in the morning Navy entered the passing stages. Our hearts broke. We prayed for God to save her. Navy passed away March 6th at 2:30pm just 4 days before her 7th birthday. She is now our angel in heaven. She was always a very special girl she always had so much love to give. Navy always wanted to make everyone happy she always put everyone before herself. Her laugh was infectious she could light up a room with a single giggle.