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4/25/2016 Latest post:
September, 4th 2013 was the best day of our lives. Ben was born as healthy and beautiful as a baby boy can be. He has always been very sweet, thoughtful, polite, outgoing, energetic and most importantly, healthy little guy. He is our heart and soul and a bright light in many peoples’ lives.
The week leading up to Friday, March 11th we had been noticing some excessive bruising on his lower legs and a few small red pin point spots on his face and chest. After the dreaded internet searching, we came to the conclusion that there were no normal or everyday reasons for the spots, petechiae, to be there. That Thursday night, it was decided we were taking him to the pediatrician the following morning. After much discussion with our absolutely amazing pediatrician, Dr. Natasha Burgert and prior to the results of the blood test, she was “moderately concerned” but thought it was most likely Immunethrombocytopenia, ITP. A couple hours had passed and he was napping when we received the call that has changed our lives forever. The doctor explained the blood test results and everything was pointing to Leukemia. We immediately packed a bag and checked into Children’s Mercy Hospital. The next morning we had a meeting with the doctors and we received the diagnosis. Ben has T cell, acute lymphoblasticleukemia (ALL). Shortly thereafter a port was placed in his chest and will remain there for the next three years to administer his treatments. Though his prognosis is positive, the road will belong and difficult. Hopefully the first intensive round of chemotherapy and steroids will conclude on 4/8/16. The second stage of his treatment plan will consist of weekly chemotherapy for the duration of six months. The third and final round, he will receive chemotherapy once a month for 2 ½ years.
Ben’s favorite things:
Activities – The outdoors, playing ball, riding his bike, walks to the park, swimming, riding his tractor, playing with other kids, helping his mom water the flowers and dad mow the lawn.
TV & Movies – PJ Masks, Paw Patrol, Go Diego Go, Lion Guard, Jake and the Pirates, Peppa Pig, Jungle Book, Bubble Guppies and Land Before Time.
Colors – Orange, blue, white and stripes.
Foods – Mexican, pizza, hamburgers, chicken nuggets, french fries, hummus, KETCHUP on everything, ice cream, most fruits and vegetables.
We are thankful Ben is blessed and fortunate to have so many people in his life who deeply care about and love him very much. He is a strong little fighter! Benny will beat and overcome this indiscriminate disease and go on to live a happy, healthy, normal life.