The house that Ronald built
June 25, 2008 · Updated 9:10 PM
It was one week before Carli's fourth birthday.
That's when the diagnosis came.
She should have been dreaming of opening birthday gifts, but days before her Dec. 10 birthday, little Carli Newman was instead looking at beginning chemotherapy.
She'd been out of school for more than a week. She'd been sick for at least month prior to that doctor's visit. She just wasn't herself. Carli was lethargic; all she wanted to do was lie in one spot and watch the same children's video over and over.
She was taken to the emergency room three times that week. At first, doctors told her mother, Erin Waterman, that her daughter had the flu, but Mom knew better. Carli would normally be bouncing off the walls with energy and curiosity.
In a last-ditch effort to pin-point Carli's illness, doctors discovered her lungs had filled with fluid -- 1½ liter's worth.
They also found a 6.5-centimeter mass in Carli's chest. It was cancerous: lymphoblastic lymphoma.
Last December, the life of Carli Newman and her mother Erin Waterman changed forever.
At the time of Carli's diagnosis, Waterman and her daughter were living in a rental home at Lagoon Point. Erin was employed as a medical dictation specialist at Whidbey General Hospital, and did on-call work for a transcription services center in Seattle. Carli had just started another year of preschool at South Whidbey Children's Center.
But the diagnosis of cancer meant weeks, if not months of hospital visits and a long treatment regime.
After her diagnosis, Carli was to enter an intensive treatment regime of chemotherapy at Seattle's Children's Hospital. A brutal schedule made it necessary for Carli and her mother to live in Seattle.
At first, Waterman planned to simply stay in a hotel for two weeks. But when the doctors said the treatment could be six months or more, they knew they'd need to find an alternative.
That's when Waterman and and her daughter found a new home, a home that Waterman is now passionately telling others about.
Last December, Newman and Waterman became the newest tenants at the Seattle Ronald McDonald House.
Ronald McDonald House Charities was created to respond to the needs of the families of critically ill children. There are 245 Ronald McDonald Houses around the world, and they're designed not as a hotel or hospice, but as a home away from home.
Each Ronald McDonald House has guidelines that every family at the house must meet. But Waterman didn't mind at all.
"At first I thought, ugh, we have to do chores. But then when you're there you appreciate it and the normalcy it brings," Waterman said.
Each family has a private room with a private bathroom, a longed-after luxury for most families going through cancer treatment, Waterman said.
"You can't get that at the hospital. If you have to stay there for a prolonged period of time, you're walking down the hall in your robe to take a shower," she said.
"You just don't know how much you appreciate the little things," Waterman said. "We never could have handled traveling back and forth to the island and the hospital."
Waterman began a Web journal shortly after coming to the Ronald McDonald House.
The first entry, Dec. 23, 2005, made this observation of their new home: "Carli and I are surrounded by families in crisis at the Ronald McDonald House and Children's Hospital, yet love is the primary feeling one comes away with when a child's life is threatened. I have never witnessed such powerful spirit and strength in children and parents as I have observed over the past month since Carli's treatment at Children's Hospital."
And while Carli's always been advanced for her age -- very talkative, inquisitive, courteous to others -- Waterman said the experience of living at the Ronald McDonald House changed both them both. And Carli, especially for the better.
In her journal, Waterman said: "All I know is one month prior to Christmas Day Carli was struggling with what was thought to be asthma, bronchitis or pneumonia, and on Christmas Day we have come this far in our journey together. I am inspired by Carli's strength and endurance."
With Carli's cancer now at bay following nine months of intense treatment, Waterman has now turned into a spokeswoman of sorts for the Seattle Ronald McDonald House.
At a benefit gala night for the Seattle Ronald McDonald House earlier this month, Waterman was a guest speaker and the lone parent to speak.
The night raised a total of $880,000, with $220,000 pouring in immediately following Waterman's speech.
She wants to spread awareness of the house here on Whidbey.
"People don't even know that this place is available to people if their children and their family ever need it," Waterman said.
"People living on Whidbey meet the requirement of being a ferry ride or a less than 60-mile drive away from the hospital, so they are eligible for overnight stays," she said.
So while Carli was running around dressed as a ladybug this week -- it's last year's Halloween costume that still fits -- Mom was busy planning her next big speech. She has another Ronald McDonald House benefit coming up.
"It's really hard to watch your child go through something like this," Waterman said. "Most people feel like they're going through the treatment, too, and that when there's a treatment, 'we' have an appointment."
Waterman learned to help medicate and care for her daughter. One of the oral medications needed to be crushed and combined with cherry syrup to disguise it from Carli. To do this, Waterman had to wear gloves and a mask, for what was good for daughter was toxic for mother.
At one point Carli had to take morphine and anti-nausea medication to be able to handle being able to eat or drink. She was in isolation because of a chicken pox scare after a possible exposure. Carli had to face treatments that were mood-altering, potentially dangerous.
But through it all, the Ronald McDonald House kept Carli and her mother's spirits up.
In May, Waterman noted her daughter's activities: "Carli spends several hours a day in the playroom, today serenaded by a guitar/harmonica player while making Play-Doh waffles and raspberries. She colors, paints, made and painted a step-stool (with help of monthly Home Depot volunteers), made a collage of feathers and beads, made a picture frame with a drawing of Carli and Kaitlin (Richmond) holding hands, etc."
At Christmas Time, Carli and other kids at the Ronald received a holiday cruise around Elliot Bay, escorted the entire time by officers from the Seattle, Kirkland and Medina police departments.
"We were treated like royalty," Waterman said.
Waterman fell in love with the diversity of the Seattle house.
"It was great mix of people from different walks of life, from different parts of the country coming together for their kids," she said.
In one Web journal entry she notes meeting a family with a child airlifted from Alabama, one from Missouri, at least five from Alaska, four from Montana, two from Idaho, and one family that travels every 20 days from Missoula for treatment (and has done so for the past 13 years).
And Carli found a new love: acting.
Jet City Improv visited the house and offered workshops for the kids. Now Carli continues with Whidbey Children's Theater, and is enrolled in the Little Players classes.
While at the Ronald House taking care of Carli, Waterman found herself more aware than ever of the statistics relating to childhood cancer and the funding and support out there to fight different childhood diseases.
She began writing letters including one to her representatives in Congress in support of CureSearch, a childhood cancer research organization. That's when she began to grow as an public speaker with a big message.
"I've always considered myself a shy person, but this is different," Waterman said.
Waterman is helping to plan "Walk Across Whidbey" in May, a four-day walk the length of Whidbey (11-12 miles per day) to raise money for the CureSearch. She'd also like to get a support group going for families on the island who have children with cancer.
Waterman and her daughter consider themselves lucky. Despite Waterman losing her healthcare benefits after cutting her hours at work, much of Carli's medical costs were covered under Medicaid. And any cost of living expenses have been aided by all those people who donated to Carli's benefit, held on Whidbey in July.
While Waterman said her daughter has maintenance chemotherapy and daily oral medication ahead of her, she's surprised by how far her daughter has come so far.
"For her to bounce back like this is absolutely amazing," Waterman said. "We couldn't have done it without the support of friends, family and the Ronald McDonald House."