Mackenzie Newsome, the Danbury pre-schooler who survived the operation to remove a tumor from her heart, will start radiation therapy Tuesday. The cancer that started near her heart moved to her lymph nodes.
Mackenzie will be treated in Boston at Mass General with proton radiation for what remains of her epithelioid sarcoma. In June, surgeons removed a softball sized tumor from around her heart, and it is possible, Mackenzie's mother said, it was then already in her lymph nodes.
"We leave Monday," Melissa Newsome said. "It's five times a week for six weeks. We now have three hospitals, three teams of doctors and three oncologists."
Mackenzie has been treated, seen or operated on at Yale, Boston Children's Hospital and at Massachusetts General Hospital.
After her June operation, the bloodwork was clear and everything looked good for about a month. Then cancer was revealed in the lymph system.
That's a lot to go through for a four-year-old girl who wants to play with her brother Jake, but not too much, and with her dog Henry. Mackenzie doesn't want to play with Jake when he gets grabby or he starts to slap her. Jake doesn't speak yet, so he doesn't understand all the rules. Mackenzie is generous with rules when it comes to playing with Jake.
Mackenzie sleeps with a Cinderella blanket, and she likes to look through red plastic bingo chips to see the world in red.
"If it wasn't for the hair, she seems like a regular four-year-old," said Melissa Newsome, who admits Mackenzie is her first four-year-old, so she isn't sure how regular Mackenzie really is. "She's a bossy four-year-old. She doesn't nap. She runs around the house. She likes to do make-up."
The family will live in an apartment in Cambridge during the six weeks of treatment in Boston, and Melissa said the family can afford that because of the generous donations Danbury people have made to help the family. "People gave and gave and gave," Melissa said.
A new fundraiser is being planned at Double Twister ice cream on White Street, and the Connecticut Chapter of the Make a Wish Foundation is sending the family to Disney World in November after the treatment is completed.
"I registered her for pre-school," Melissa said, but that can't happen because Mackenzie's immune system is compromised. The doctors will tell the family when it is safe for her to return to pre-school.
Nancy Lahoud, Mackenzie's grandmother, who she calls Mi Ma, will visit the family in Cambridge on weekends, Lahoud said.
"She won't miss a weekend," Melissa Newsome said.