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Bonney Lake Mayor Neil Johnson's cancer year
Let's just forget the suspense and skip right to the end of the story:
"I've been getting good reviews from doctor," says Mayor Neil Johnson from his living room on a recent Friday evening. "He's been happy."
Johnson's color is coming back, as is his hair, and the mayor is starting to feel like himself again after spending the last year battling leukemia.
"There's been no cancer," he says. "We couldn't ask for it to be any better except to be off all the meds."
The "meds" are still needed to prevent his body from rejecting as a foreign body the bone marrow he received as a transplant last August, an operation that saved his life and earned him a second birthday, complete with cards from his nurses at the University of Washington Medical Center.
But that day is coming soon for Johnson and his family, followed, he hopes, by being allowed to mow his lawn again.
That will be the day he is fully recovered. But for now, it is one day at a time.
"Everything would indicate I am on the right track," he says with a broad smile.
But it wasn't always this clear and as Johnson and his wife MaryAnn prepare for this year's Relay For Life, where MaryAnn will serve as the honorary chair for her role as caregiver, the family took a moment to look over the past year to thank those who helped during the difficult times and encourage others to never give up the fight against cancer.
"Don't be afraid to reach out," MaryAnn said. "It helps a great deal."
The story begins in December 2010, when Neil, known for his seemingly boundless energy, would come home from catching a game at Husky Stadium or some other event and found he would need a nap to recharge.
MaryAnn also noticed he was a little paler than usual.
The Johnsons figured Neil might be getting an ulcer so he went in for a checkup in January. The doctor took some blood and scheduled an ultrasound for his stomach.
The results showed an enlarged spleen and some disconcerting numbers in his blood count.
"I was kind of freaked out," Neil admits. "I didn't know what to think."
But when his family physician recommended an oncologist, the reality of their situation began to take hold.
"I said, 'Isn't that a cancer doctor?' and she said, 'Yes, I think you have leukemia," he says.
On Feb.1, Neil saw the oncologist for the first time and got a "good news – bad news" report: yes, it was leukemia, but it was chronic myelogenous leukemia, which can usually be controlled, though the cost of treatment is around $8,000 a month.
Neil's tests showed him the middle of the spectrum for CML, in the "accelerated" stage, but not yet a "blast crisis."
The treatment was a pill form of chemotherapy, which he started.
"We just kind of looked at each other and said OK," MaryAnn said with a shrug. "It just turns your world upside down."
But though his treatment had begun, Neil and MaryAnn had yet to tell friends or the family, including Rendi, their 17-year-old daughter.
"It was horrible," Rendi said of the discussion. "It was sad. I was crying, of course."
MaryAnn said the news made them "numb for a bit," but the family soldiered on for while, Neil taking his meds and seeming to do OK. But in March, Neil was out running after his regular morning mocha, but didn't feel particularly well, even throwing up when he finished.
Thinking it was a flu bug, Neil went back to work, though he says he still felt feverish.
The next morning, it happened again.
"I knew something was wrong," he says.
Still thinking it was the flu, Neil went back to see his doctor, who took some blood and sent him home to rest.
At 3:45 p.m., a time burned into Neil's brain, the phone rang with his doctor on the other end.
"He says 'Neil, you don't have the flu. We need to make you a reservation at UW Medical Center and start receiving chemo," the mayor remembers. "I couldn't wrap my mind around it."
Neil's leukemia had entered what is known as the "blast crisis" stage, the final stage of the disease.
"When you get to that phase, it acts more like (acute myeloid leukemia)," MaryAnn said, citing the more dangerous version of the illness. "Yeah, that was a hard day."
MaryAnn said tests showed almost 80 percent of Neil's blood cells were cancerous.
"The doctor said 'You don't have time to mess around," she said.
The Johnsons were given two choices: a chemotherapy package with a 40 percent chance or a new, experimental drug the doctor thought would work.
Having been through a similar situation with a family member before – one that did not end well – MaryAnn pushed for the experimental treatment.
So Neil played "if you were me…" with the doctor and the Johnsons decided to go for the experimental treatment, which began to work immediately.
"Each day I got treatment and they could see my cancer cell numbers drop," Neil said.
Neil spent seven days at the "country club," his phrase for the UW Medical Center, but still, no one knew Neil was fighting the disease. The mayor had kept up his work and city schedule through it all so far, though the next phase would mean having to go public with his illness.
The first person he told was City Administrator Don Morrison. Johnson said he volunteered to resign from the part-time position, but the response from staff was overwhelming.
"They didn't want me to quit," Neil said. "I was honored more than anything else that that's how they felt."
Neil continued to stay in daily contact with Morrison through his entire treatment. The entire City Council voiced their support and staff overwhelmingly said the mayor was needed.
As word started to spread through the city, the news made its way to the ASB club at Bonney Lake High School, where Rendi graduated in June. A group of students from the school one day showed up at the hospital with plans to do a fundraiser for the family.
"I was floored," he said. "I was just honored they'd spend the time to do that."
Meanwhile, members of the Panthers fastpitch team, where Rendi was one of the stars, made "NJ" bracelets and visited the hospital to show their support. Rendi said during her father's treatment, she tried to stay focused on pitching to block out the chaos at home.
Treatments went well but Neil was having trouble adjusting to the food. He wished for a box of Honey Comb cereal, a favorite, which one of his nurses overheard and brought him a box.
"I can't say enough about the nurses," he said, smiling.
The fundraiser for the family came together in May at Swiss Park and was exceptionally well-attended. A silent auction of dozens of donated items – ranging from Seahawks and Sounder tickets to bottles of wine and everything in between – raised thousands of dollars for the family's medical expenses.
It was very humbling," MaryAnn said.
"I was very honored," Neil said, adding that he was amazed to see all the people from the various parts of his life all together in one room. "It almost felt like a wedding."
But there was a problem.
"I wasn't allowed to bid on anything!" Neil said.
The event also featured a table from the National Bone Marrow Association, which looks for bone marrow donors to match with patients around the country.
Though he has siblings, neither his brother or sister was match for marrow, meaning Neil, like millions of others around the country, would be at the mercy of the marrow donation list.
Luckily, a donor match was found – a 32-year-old female. That is all the family knows.
A cell transplant was scheduled for August.
Neil said he spent the month after the fundraiser in remission and "doing what Neil does," including attending the Association of Washington Cities conference in Spokane and going on a family vacation.
"It was the best scenario to go into the transplant," MaryAnn said.
On July 30, Neil began a two-week pre-transplant work-up. The family hosted a barbecue for friends and family Aug. 7 and the following week, Aug. 13, Neil checked back into the "country club" for a few days of high-impact chemotherapy.
"That's when my hair started falling out," he said. "All over my pillow."
But city business still called to him and helped keep him going and stay positive.
On Aug. 16, the mayor was scheduled to get his transplant, but an infection caused a fever spike and the transplant was postponed.
That night, however, Neil made local and national news by Skype-ing into the City Council meeting from his hospital room "so they didn't forget about me."
Appearing on a screen behind the council, the mayor conducted the meeting as if he was there, talking with staff and even reading a Beautify Bonney Lake proclamation.
"It was really important for me to read the proclamation," he said, adding that he wanted the council, staff and citizen to see that he was ok. "I just felt like I needed to do it."
"That was a really good day and I was very proud of him," MaryAnn said. "His service to this community is very important to him."
For Rendi, that appearance showed her how determined her father was about his job and reinforced his work ethic. But it also showed her how the city could "put aside their differences and come together as a community" and how much her father meant to the city and how much it meant to him.
In July, Neil walked in his first survivor lap during the 2011 Relay For Life, something he said was a struggle because he never really expected to be there.
"You never think you're going to get it," he said, shaking his head.
The event encouraged him and the family and reminded him - and anyone fighting cancer - that people care.
Plus, seeing the luminarias – the lighted bags purchased in memory of those struggling with or who have lost their battle with the disease – gave him a new perspective.
"I could easily have been one of those bags," he thought.
On Aug. 17, Neil received his transplant, a bag of plasma that slowly dripped into his arm over a period of three-and-a-half hours. His body accepted the transplant and even earlier than expected, his numbers started to show positive results.
"That was an exciting day," MaryAnn said.
He was officially released to the Seattle Cancer Care Alliance Aug. 31. He and MaryAnn checked into the Marriott in Seattle where they stayed (officially, though not entirely) for the next three months.
But Neil was able to get back to city business, even appearing that afternoon at the ribbon cutting for the state Highway 410 widening project.
"From that point on, when I got out of the hospital, I didn't miss a meeting," he said proudly.
He continued to commute to and from Seattle for the council meetings, returning for treatment, and his doctors were encouraged about his results, though they still didn't want him staying at home.
Not that it mattered for Neil and MaryAnn, who began staying at their house a few nights a week, returning to Seattle for test and checkups, with MaryAnn making the 60-mile round-trip drive.
"I was his chauffeur for three months," she says with a laugh.
Friends and family helped out, watching the couple's 6-year-old daughter Jadyn, and helping with housework, such as mowing the lawn, something Neil is still not allowed to do because of worries about his immune system dealing with what can be kicked up during mowing.
He could still not return to his day job, but Neil kept busy with city business, attending council meetings and events, meeting with staff and continuing a role int he operations of the city.
"Everyone could see the mayor was back," he said, but admits "I had to stay busy because I was just so bored."
In mid-March he went back to work three days a week. In April, he was back for four.
Today, Neil is in full remission and back at work full time. And though he said he sometimes tires a little quicker than before the transplant, but on most days he doesn't really notice.
"I feel like Neil, except I'm in a little different body," he said.
He is expecting a full "all-clear" from the doctor next week.
"I can promise you July 30 I'm going to start pushing them for it," he said with a smile.
For the usually jovial mayor, however, the key was staying positive and despite some dark periods during treatment, he said he is mentally "a lot better" these days, though he admits, sometimes his mind dwells a little on the "what ifs" of his cancer and treatment, something he said you have to shake if you are going to beat the disease.
"You can't think 'What if?'" he offers as advice. "Every day you are getting better."
For Neil, it was the support of his friends, family, city and especially his wife that made all the difference.
"If it wasn't for MaryAnn…" he said. "I can guarantee you there's no other person that could have gotten me through this."
Because of her role beside Neil, MaryAnn has been named the honorary chair of this year's Relay For Life as a caregiver and will speak before the Relay begins.
MaryAnn said the support of others can help keep a family going through tough times and treatments and is reminder of the care and love of friends, something to live and fight for.
"It just gives you hope,": she said. "A huge part of healing is the attitude, the mindset.
"And that's the hardest part," she said, adding that it's a struggle to stay positive sometimes. "I tell my friends 'we can never repay you for what you did.'"
Neil said the fight with cancer has changed him for the better, helping him refocus on what's important and learn to not sweat the small stuff.
"I don't get too excited over the little things," he said. "Traffic jams don't bother me as much."
Neil also said he is spending more time with his girls than before, time he didn't even know he had.
"You don't realize there's more time to be spent," he said. "It's really made me solidify my positive outlook on all the things you can't do."
The couple plans to "pay it forward," staying involved and doing what they can to continue to raise awareness for the bone marrow registry that saved Neil's life.
But most important for the mayor and his family is the sense that they were given a new lease on life and the friends, family and city that helped them through it.
"I can define Bonney Lake as a community right now," Neil said of his city, which is considered by many to be simply a bedroom community of disconnected commuters. "They came together for me. They come together for others now."
The mayor is also thinking again about his future, about visiting Rendi at college in Minnesota and watching little Jadyn grow up.
And you can bet Neil and MaryAnn will be there, living each day with a new perspective and a new lease on life.
"My future is tomorrow morning," Neil said. "Once I get to that day, the next day is my future."
Though there is still one thing he is waiting for.
"When I can cut my grass, I know I'm back completely," he said with a laugh.