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Ben Whitaker

  • Acute Myeloid Leukemia (AML)

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Ben always had a spunky personality and special spark in his eyes that gave us inklings that he was unique. However, it wasn't until April 7th, 2009, at the age of 4 1/2, that we would learn exactly HOW unique our son was. It was on that day that we learned that he was one of approximately 500 children in the US with Acute myeloid leukemia (AML).
 
Like many stories that you hear, Ben had a relatively healthy childhood up until that day. Ben had colds, a flu bug here and there, and a strong will to not poop on the potty until he decided it was time! And like many stories that you hear, he did show signs in the two weeks leading up to that day of being tired and having a pain in his wrist that would not go away. With an out-of-state move pending in the next week, however, we chalked up his symptoms to that of a little boy who loved his friends and life in Chicago, and did not want to move.
 
Ever the charmer, Ben begged to join his 18 month-old brother, Colin, at the pediatrician's office for one last visit to say goodbye and bring flowers to his favorite physician, Dr. Laura. What was supposed to be a routine visit for his brother turned into the first chapter of a frightening book that we never could have guessed would become our lives. With a hemoglobin level at 5 and a stark white complexion, Ben was sent straight to Children's Memorial Hospital in Chicago. Within four days he had a handful of transfusions, was sedated and sent to surgery twice for bone marrow aspirations, lumbar punctures and a PICC line placement, rode in an ambulance twice and was flown in a "teeny tiny" medical transport jet to the Children's Hospital of Philadelphia (CHOP).
 
Ben WhitakerFor the next seven months Ben spent 4-6 weeks at a time (a total of 160+ days, but who's counting?!) in a 10’ x 15' room, allowed out only once a day for an hour to the playroom. He endured countless blood and platelet transfusions, 5 rounds of extremely high dose chemotherapy (totaling 98 doses), four broviac-related surgeries, many sedations, lumbar punctures, bone marrow aspirations and endless side effects. He lost his hair, lost his eyelashes (twice!) and lost the ability to play outside, go to school and be a 'kid.'
 
In that time, though, Ben received much more...unconditional love and support from family and friends, top-notch medical attention, AMAZING care from an INCREDIBLE nursing staff, overwhelming support from foundations like Alex's Lemonade Stand, lasting friendships with patients, music, art and school teachers, AND a crush on a wonderful child-life specialist named Sarah. He celebrated his 5th birthday in the hospital with a party, put on countless REM/Coldplay/David Cook concerts standing on his make-shift stage (who said those couches only had one purpose?), built train stations out of cardboard boxes – and taught many, especially me, how life can be lived to it's fullest regardless of where you are or what you are going through... if you have the determination.
 
Today, Ben is 6 1/2 years old, 13 months post-treatment and in remission. Every day is a gift. I know that relapse can happen, but I also know that Ben has proven to us that he has the vim, vigor and passion to get through anything in life. The last week of his treatment he excitedly made unique awards and hung medals outside of his room for every one of the nurses on the oncology floor at CHOP. If only he knew just how deserving of his own unique award he was... he is my hero.  :)
 
Written by Elise Whitaker, Ben’s Mom
February 2011

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