This article first appeared in the July 10, 2014 edition of the Vermont Standard.
By Katy Savage, Standard Staff
The Albertys can’t go to grocery stores or to any indoor event. They can’t have plants or guests in their house. They keep a bottle of hand sanitizer and disinfecting wipes at every corner in their house.
“We sanitize all of us probably every hour,” Mary Alberty said.
For the next five months or so, Mary and Matt’s son Nolan, 3, must be kept in semi-isolation. He can’t drink out of a faucet and can only eat fruits and vegetables from the United States — that are well cooked and well washed. He can only meet other people in an outdoor setting.
“We have to be really cautious about who’s around him, breathing too closely,” Alberty said.
Nolan had a bone marrow transplant just over 100 days ago — the latest attempt to help him fight acute myeloid leukemia, a rapidly developing cancer that starts inside bone tissue. His immune system is weak as his body adjusts to the DNA from his donor.
“You have to be in complete control of your environment,” Alberty said.
Nolan, who played with water guns outside with his younger brother, Colin on Sunday at their Reading home, laughed with his dad as he drove an electric truck, as if nothing was wrong.
But his struggle has been real.
With all the hospital visits, and spending multiple weeks on his back, Nolan’s legs are wobbly. He’s had to learn how to walk three times.
At first glance, Nolan’s skin looks darker than his brother’s, but on closer examination, his skin is actually just more hairy. (The medication he takes promotes hair growth.)
‘Everything starts spinning’
Alberty didn’t have a calendar in front of her, but she could remember every date of her son’s major hurdles so far.
Nolan was diagnosed on July 27, 2012. It was a Friday. Alberty and her husband, Matt, called urgent care when Nolan was bleeding uncontrollably at the mouth.
“He was super lethargic, really tired,” Alberty said.
Bruises covered Nolan’s body and they weren’t healing or changing colors. Doctors knew almost immediately that he had leukemia.
“Everything starts spinning,” Alberty said.
It turned the Albertys’ life upside down in an instant. They dropped everything at home and moved into the hospital after he got sick for five months, only going home a couple weekends from July to December. Alberty, who was pregnant at the time, kept outfits for work in the back seat of her car so she could go to her job as a dietician at the VA in White River Junction. Matt quit his job to be a full-time hospital dad.
“He probably wouldn’t have made the weekend if we hadn’t gotten to the doctors,” she said.
Nolan went into remission on Dec. 11 and Alberty went into labor that night with Colin, who was born Dec. 12.
‘Just do it’
Nolan has had six major surgeries so far and countless visits to the hospital. He had a feeding tube put into his abdomen, and surgery for intussusception after his intestines folded over on themselves from all the fluid in his body. He had a mediport inserted in his left chest along with two broviac catheters (a more permanent IV).
There is a scar down the back of Nolan’s head — from brain surgery last November to get rid of a tumor on the left side of his brain.
Nolan also has regular anesthesia for bone marrow biopsies and spinal taps. But he never complains. Up until recently he never asked questions.
“You just do it,” Alberty said.
Matt added: “You learn how to live in a hospital.”
‘Got to be done’
Nolan was in remission for about a year before he relapsed, Nov. 22, 2013 — just after he had gone for a check-up the week before that showed he was cancer-free.
Nolan stopped breathing at midnight and started having seizures. Alberty gave him rescue breaths while they waited 40 minutes for the ambulance to arrive.
The ambulance took one look at him before flying him to Dartmouth, where he was put into a coma two days later.
The left side of Nolan’s brain had a tumor the size of a half-dollar while the right side was coded in leukemia cells. He had to have brain surgery.
The Albertys stayed at the hospital again for nearly a month, until Dec. 18, when they found out the cancer still wasn’t gone. Nolan would need a bone marrow transplant.
Despite it all, the Albertys try not to think about it — they just do what they need to and admit that they’re in denial.
“It’s got to be done,” Alberty said. “That’s what we keep saying to ourselves. It’s got to be done.”
Nolan got chemotherapy in his spine every Wednesday to prepare his body for the transplant.
He was in a coma for 17 days in March and he spent 45 days in the intensive care unit while he received the bone marrow transplant from an unknown 20-year-olds.
“I think bone marrow transplant was the biggest emotional roller coaster in the road because you get so excited about this transplant,” she said.
But the only exciting thing is that it happens.
Back home, Nolan has a community of supporters.
The Proctorsville Fire Department made him an honorary firefighter before he received his transplant.
“He had a big tough fight and he still does,” said Proctorsville Chief Bob Glidden, who knows Nolan through a fellow fire captain.
There is also a “Pulling for Nolan” sticker on the side of the fire trucks that the fire department sells for $5. It also sells wrist bands that say “Little Man, Big Fight.”
A family friend, Lisa Marks, whose husband is with the fire department, also set up a page on Gofundme.com. As of Monday, it’s raised $21,250.
Marks ran the Boston Marathon for the Dana-Farber Cancer Institute in Boston. Nolan was her matched patient partner.
“He became my little running inspiration,” Marks said. “It gave it a lot more meaning.”
Nolan and Alberty leave for the hospital in Boston every Friday morning around 4 a.m. He used to call the hospital home in the beginning because it was so familiar to him.
“He loves it. He loves hospitals,” Alberty said.
She said Nolan crawls into the hospital bed and helps nurses insert medicine into his mediport.
The family also makes weekly trips to Dartmouth for check-ups. In a few weeks, now that it’s been more than 100 days since his transplant, Nolan will have a magnetic resonance imaging (MRI) to check cancer in the brain, a spinal tap to see if there is cancer in his fluid or a bone marrow check to make sure he’s cancer-free.
“I like to say he’s in remission because there’s no options, he has to be,” Alberty said.
‘He doesn’t know’
Nolan squirted his mom’s toes with a yellow water gun and played outside with his brother last Sunday. “He doesn’t know he’s sick,” Alberty said.
Later on, Matt made his sons peanut butter and jelly sandwiches, bananas and chips, which Nolan and Colin sat a small picnic table to eat. Nolan requested ketchup with his food — he’s lost his appetite since the transplant and craves dip and salt. Colin made a reach for his brother’s milk cup, touching the straw.
“Colin, no you can’t touch that,” Alberty said as she reached for the cup — an attempt to keep Nolan’s area germ-free.
Standing outside her home, Alberty said she tries not to think about the future.
“The more families you meet the sadder it can get at times,” Alberty said.
Even after Nolan escapes the daily challenges of living with cancer, his spine will be two inches shorter than it should be because of all the radiation he’s had. He will never be able to do timed tests in school and may have learning difficulties due to the radiation in his brain.
“My goal is not to tell him why or not to give him excuses in school,” Alberty said.
Nolan’s heart, lungs and kidneys will need to be monitored all his life, but it didn’t seem to matter for the Albertys, who live one day at a time.
“We won’t ever get rid of anything, but we deal because he’s happy and that’s all that matters,” Alberty said.