Milana Rufo has spent much of her young life battling cancer — but now she is getting down to the serious business of being a kid.
By CAROL ROBIDOUX
Union Leader Correspondent
Milana Rufo is your typical 2-year-old, in that she changes her mind as often as she changes her sparkly shoes.
Beyond her bubbly personality, her can-do-all-by-myself attitude and contagious giggle, she is, on the outside, like any other little girl on the cusp of 3. But she has been to hell and back. Her tiny warrior heart rivals her indomitable spirit.
Seconds later, the Tinker Bell costume is a lime-colored heap on the floor, and she’s wrestling with the candy-colored Cinderella gown which, once in place, is also not quite right. Suddenly unsatisfied with her options, the doe-eyed tot tosses her tiara and shimmies out of the gown and into a momentary funk — where she remains for a few seconds, before she realizes how much fun it is to run, half naked and full speed, across the living room floor into a couch pillow, hollering “boink” out loud whenever her head hits the fluff.
“It feels like it’s the beginning of a normal life, like all of a sudden these doors just opened and it’s a whole new world for her,” said Rufo, who indulges her daughter in costumes and sparkly shoes because of the simple pleasure it brings them both.
It was just about this time two years ago that Milana was diagnosed with Wilms’ tumor, a childhood cancer that strikes only about 500 children annually. Milana was 10 months old when her mom, a physical therapist, knew that the lump she felt on her baby’s side was all wrong.
The worst of it was the eight months of chemotherapy, which left Milana unable to eat solid food and stole the wisps of hair she’d spent 10 months growing. After her surgery, which included removal of her kidney and adrenal gland, Milana had to learn to walk all over again.
But that was then.
Today Milana’s story transcends happy endings, says Rufo. “It’s truly a happy beginning,” she said. Although Diane Rufo said her marriage did not survive the ordeal, she and Milana’s father, John Rufo, remain equally committed to their daughter’s happiness — they have come too far not to put their differences aside for the love of a lucky little girl.
“We’ll probably go trick-ortreating up in Londonderry where her dad lives — there are lots of kids in his neighborhood,” said Rufo. She used her iMac computer to create a book chronicling her daughter’s journey, “From Hospital to Healthy,” a picture book that continues to captivate Milana.
Rufo has also been tracking all of her daughter’s “firsts” now that her immune system is fully functional and she no longer has to worry about catching a game-changing germ.
“Even though they say childhood cancer has a 95 percent survival rate, it’s not the cancer that kills you — it’s what you are susceptible to while your immune system is suppressed.
That’s the part where you hold your breath, waiting for the time when you can really get back to normal,” Rufo said.
“Even though they tell you not to keep your kid in a bubble, of course I did.”
Yesterday, Milana was outside playing, crunching through the leaves on her bike and shrieking with joy over nothing in particular with her next door neighbors, still a novice at friendships.
In 10 days she will clutch her lime-green jack-o-lantern tightly and, dressed as either Tinker Bell or Cinderella, she will, for the first time ever, knock on someone’s door in anticipation of the sweetest holiday known to kid kind.
On Dec. 25 she will be surrounded by her extended family and friends, germs be damned, taking in the wonder and magic of a season that hardly comes close to the wonder and magic she has brought all of them in such a short but eventful lifetime.
“I was so afraid that keeping her isolated from kids would make her unsociable, but she’s the opposite — she’ll talk to anyone who will listen. She’s a typical girlie-girl who has to wear her glittery, sparkly shoes with a matching purse — she might have a truck or hammer in there — but has to have a purse,” Rufo said. “She’s some kid.”
Milana is one of six cancer survivors who will be honored during a Halloween Party/Blood Drive held Oct. 25 from noon to 5 p.m. at City Hall Plaza in Boston. The event offers an afternoon of ghoulish fun for kids while parents donate life-saving blood to Boston’s Children’s Hospital. The event is sponsored by SpookyWorld/Nightmare New England fun park in Litchfield.
Walk-ins are welcome, or to make an appointment please call 617-355-1997.