Phoenix was recently diagnosed with Hepatoblastoma. It is a one in a million cancer that affects the liver in children under 3. His parents knew something was wrong for months and the doctors and hospital did not take them seriously. His mom says, “His tumor was visible when you looked at his belly, yet we were told he was constipated and totally healthy. My mom instinct persisted, and I brought him back to the er on July 5th demanding more scans.”
Although they knew something was wrong, the entire world felt like it came crashing down when they pulled his parents into the room where they were told their two year old, vivacious happy little boy, has cancer. They were flown to St Jude’s and began treatment immediately.
“The shock is just beginning to settle… Phoenix has a rare condition in which the liver is almost completely consumed by the tumor and his portal vein is also clotted with cancer. The surgeon came in and said he didn’t feel comfortable to do the resection. So now he will be put on a transplant list. Nearly a month later, we are staying at St Jude housing, and although they are helpful, this new reality is so difficult to accept. My husband and two older sons are here with us, we have had to uproot everyone to stay together as a family. It seemed like the only right choice in a situation of such tragedy.”
Phoenix is responding well to the treatments, but he is very traumatized by this new reality. Life will not be the same. Phoenix is still smiling and he is so strong! He has now been listed for a full liver transplant.
Phoenix has always been quite the character, he is vivacious and adventurous and a joy filled child. Even throughout chemotherapy, he has had a smile through it all.
Phoenix loves the outdoors. Before he was diagnosed, his family spent a lot of time hiking trails in the Appalachian mountains where they lived. He loves animals, sports, and playing with mud. He enjoys the river and the beach and camping! To Phoenix and his family, NEGU means, “so much to our family. We will never stop fighting for Phoenix. He has shown us such strength through his adversities… Our family has always practiced never giving up, but cancer has shown us all, with love, we can conquer anything!”
When he received his first JoyJar, “He was so excited! That night he had a fever, and the joy jar was packed at the last minute! The jar full of goodies made his hospital stay more enjoyable! We played, colored, and enjoyed ready all the sweet notes! This foundation has given us so much hope! Phoenix is so excited the days that mail arrives from NEGU! The focus of this foundation is beautiful and inspiring!”
WE NEGU FOR PHOENIX
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