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Jaffrey boy’s wish comes true after battling cancer

  • Matthew Johnson and his family prepare for their trip to Disney World as recipients of Make A Wish,<br/><br/>(Staff photo by Alyssa Dandrea)
  • Matthew Johnson and his family prepare for their trip to Disney World as recipients of Make A Wish,<br/><br/>(Staff photo by Alyssa Dandrea)
  • Matthew Johnson and his family prepare for their trip to Disney World as recipients of Make A Wish,<br/><br/>(Staff photo by Alyssa Dandrea)
  • Matthew Johnson and his family prepare for their trip to Disney World as recipients of Make A Wish,<br/><br/>(Staff photo by Alyssa Dandrea)
  • Matthew Johnson and his family prepare for their trip to Disney World as recipients of Make A Wish,<br/><br/>(Staff photo by Alyssa Dandrea)

Seven surgeries. Six weeks of chemotherapy. Six weeks of radiation. Nineteen months cancer-free.

For Matthew Johnson, 4, of Jaffrey, who was diagnosed with a cancerous brain tumor at the age of two, every three month medical checkup is an important benchmark in a lengthy recovery process. The Johnson family spent more of 2011 in hospitals than at home, but Matthew’s adoptive parents, Rebecca and Jason Johnson, say they remain hopeful that the doctors’ appointments will become less frequent with time and that by 2016 they will officially be able to say their youngest son is cured of cancer.

“By far, this is the biggest challenge we’ve ever faced,” said Jason in an interview with the Ledger-Transcript at his family’s home in late February. “We went from Matthew knowing something was seriously wrong to a couple of months later our greatest fears being confirmed.”

Rebecca and Jason have fostered 14 children as a couple, but as soon as they met Matthew and his twin sister, Peyton, in 2010 they said they knew the twins would one day become a permanent part of their family. What Rebecca and Jason could have never predicted at that time, though, is that they would undergo a life-changing journey with the twins just months into the fostering process.

In February as all six of the Johnsons prepared for their trip to Disney World as recipients of Make A Wish Foundation — which serves children facing life-threatening illnesses — they remarked on the challenges of Matthew’s illness and how his battle against cancer has brought the family closer together.

In October 2010, Matthew developed headaches, which Rebecca said could not be explained by the usual childhood ear infections or teething issues. Matthew was often tired, walked a bit off balance, suffered from constant head pain and swelling behind one of his ears. The persistent concerns prompted Jason and Rebecca to take Matthew to Dartmouth Hitchcock Medical Center in Hanover for a sedated CAT scan on Jan. 3, 2011.

“When the doctors finished, they said, ‘Don’t leave. We have more tests we have to do right now,’” Jason said. The doctors next performed a sedated MRI. “That’s when they found it: a substantial-sized tumor in Matthew’s brain. The tumor his surgeon later described as the size of a clementine.”

Matthew was diagnosed with ependymoma, a tumor that develops from cells that line the hollow cavities of the brain and the canal containing the spinal cord. The majority of patients diagnosed with ependymoma are younger than five and the chance of reoccurrence is 70 percent.

Doctors advised the family shortly after Matthew’s diagnosis that they would need to remove the tumor as soon as possible. Matthew underwent 13 hours of surgery five days after his diagnosis to remove the bulk of the tumor. In a second surgery, doctors cut out the last of the tumor, a sliver that had gone undetected during the first procedure. For approximately a year, Matthew received his daily nutrition from a feeding tube. In order to regulate his spinal fluid, doctors inserted a permanent shunt in Matthew’s head. During the course of his treatments, Matthew was in and out of the hospital.

Rebecca and Jason described the time period between January 2011 and August 2011 — Matthew’s last day of radiation — as one big time blur. Their top concern, they said, was making sure Matthew had everything he needed to make him comfortable in the hospital and to provide him with some normalcy during a painful and hectic time.

“If I had cancer, I wouldn’t have nearly done it with as much grace as Matthew did,” said Rebecca.

Being told he had cancer did little to dampen Matthew’s spirits, Jason said. “The biggest advantage to being a 2-year-old with cancer is that you are two years old, because you don’t care; you just want to play and go ahead and be two,” he said.

When Matthew began to lose his hair during his cancer treatments, Rebecca said she was in awe over how he handled the situation. “As his hair was falling out, he would grab it and say, ‘Mom, you should put this in the trash.’ Most of us would be like, ‘My hair!’ But he knew it would grow back,” she said. Matthew would look out the window at home and say, “See mom, it’s coming down the driveway,” Rebecca laughed, recalling how Matthew thought his hair would be delivered to their doorstep.

While at Dartmouth, Matthew enjoyed watching the helicopters and ambulances come and go, and on trips to Massachusetts General Hospital Cancer Center for proton beam radiation treatments, Matthew would search the highways for fire trucks, police cars and tractor-trailer trucks, Jason said.

The Johnsons’ biological children Michael and Alex, who are both teenagers, were homeschooled for much of 2011, as the trips back and forth to hospitals in Hanover and Boston made it difficult for the family to keep the boys enrolled in Jaffrey-Rindge’s public school system. For six weeks in 2011, the family commuted the 140 miles round-trip to Boston for each of Matthew’s proton beam radiation outpatient treatments, Monday through Friday.

The physical toll those frequent appointments took on the family was indescribable, but the Johnsons said the amount of community support they received, in addition to Matthew’s positive spirit, kept them going. Michael and Alex have since been able to return to public school, and the Johnsons said they cannot thank their friends, coworkers and family enough for everything they have done.

When Rebecca’s sister, Amy Beaupre who lives down south, first heard about Matthew’s diagnosis, Rebecca said, “[Amy] felt so helpless being so far away and wanted to do something that we could remember forever.”

Beaupre referred the Johnsons to Make A Wish, but until the family’s adoption of Matthew and Peyton became official in April 2012, Rebecca said the foundation’s hands were tied. But last summer, all that changed when the twins legally became part of the Johnson family, Make A Wish met with Matthew to see what the foundation could do to make one of his dreams come true.

“He had just watched Mickey Mouse on TV and so Mickey was at the forefront of his thoughts,” Rebecca said of her son’s desire to meet the Disney character.

In the week leading up to the family’s trip to Florida, Jason said he would count down the number of days with Matthew, saying, “Mickey is five or four or three sleeps away.”

Sunday, after returning from their week-long adventure, Rebecca said the trip was more than they could have imagined. The family had first-class treatment, she said, and Matthew’s meeting with Mickey was an experience he’ll be talking about for weeks to come.

“I don’t think he ever wanted to leave,” she said. “I can’t pick one word to describe it all.”

Alyssa Dandrea can be reached at 924-7172 ext. 228 or adandrea@ledgertranscript.com. She’s on Twitter at @alyssadandrea.

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