Creating a Special Space for Jaxson to play, watch movies, rest and recover

Jaxson is a 5 year-old boy from Burlington, Wisconsin. In September of 2015, he was diagnosed with severe autism at 2 years old. Just two short months later, Jaxson woke up in excruciating pain in his hips and could not stand. His parents took him to the ER before being transferred immediately to a larger hospital after leukemia cells were detected. Later that day, on December 9, 2015, Jaxson was diagnosed with Pre-B Cell Acute Lymphoblastic Leukemia.

Jaxson is nonverbal, but he understands much of what his parents say to him. He is able to communicate what he wants with a tablet that speaks for him. Leukemia treatment along with autism has been very difficult for Jaxson and his family. However, Jaxson thrives on routine, so he has gotten to the point where he actually enjoys chemo days at the hospital. On those days he gets a lot of attention, eats treats and his favorite foods, and is able to watch tv all day! It hasn’t always been easy though of course. The first year was very rough on him. He did not understand what was going on with his body or why people were hurting him. Taking vital signs, getting bloodwork, going through the port accesses, and getting an NG (feeding) tube at one point were all very difficult. Currently Jaxson takes oral chemotherapy at home everyday. He also goes to the hospital monthly for IV chemotherapy. Jaxson has been incredibly strong and brave, and his family has learned so much since the start of this journey with cancer.

Jaxson’s room is currently brown, green and cream colored with owls. He still has a crib, and his parents said it’s the perfect time to make the transition to a big boy bed! Since Jaxson is nonverbal, it’s hard to know what all of his interests are. He loves to toss balls with his parents and watch videos on his iPad. He likes to watch the same movies and tv shows over and over again. The Cars movies and the two Monsters INC movies are his current favorites, and he loves mickey mouse clubhouse. He loves his sensory toys, such as squishy balls, light up toys, glow sticks, bubbles, sand, water, water beads, colored lights, and anything with wheels. He also likes toys that move on their own, super soft rugs or blankets, and noisemakers. He loves his big physical toys like, swings, ladders, rock climbing walls, slides, ect. Jaxson’s bravery throughout this journey is an absolute inspiration. We had so much fun creating a special space where he can play with his favorite toys, watch his favorite movies, and rest and recover.

by Kelly O'Donnell

Executive Director

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