Ali’s dream

It was a good day, as good days go when you are the mother of a child fighting for her life.

“It is just after midnight, so it’s official: Ali is 14!” Karen Borgen wrote that early morning of Sept. 5.

“Happy birthday to my amazingly strong, beautiful, graceful, goofy flower,” she wrote as her daughter slept. “You have taught me so much about love, faith, patience, pain, endurance, strength and grace. You have softened my cynical heart, you have helped me to slow down and try to enjoy each moment, you have inspired me to laugh and sing and dance like no one is watching.

“I love you more than I could ever adequately express.”

Ali Borgen was 10 when doctors, trying to determine what was causing her vertebra compression fractures and excruciating back pain, finally made the diagnosis: high-risk acute lymphoblastic leukemia.

She was one of at least a dozen Grand Forks area children stricken with cancer that year, sparking a state Health Department investigation to determine whether a common cause had contributed to a “cancer cluster” here.

The investigation continues.

Some of the children have died. Several others are healthy today, their cancers in remission.

Others, including Ali Borgen, continue to fight.

She is recovering now from a bone marrow transplant she received in September following a second grueling period of treatment with chemo and radiation at the Mayo Clinic and St. Mary’s Hospital in Rochester, Minn. If a bone marrow biopsy scheduled in two weeks shows no leukemia cells, she’ll be able to come home.

But the pain, the unceasing tests, the frustration and the worry — all continue.

“She hasn’t been feeling well at all lately,” Karen Borgen said last week from the Ronald McDonald House in Rochester, a home away from home for families with children who need long-term treatment for cancer and other life-threatening illnesses.

“She’s tired, achy, and she’s vomiting a lot. We thought maybe it was something in her medication.”

Ali misses her father, Rich, and her big brother, Dylan, back in Grand Forks. She misses her dog, Daisy.

She’s missing another long stretch of school.

“It drives her crazy when people say, ‘Oh, you’re so lucky you don’t have to go to school,’ ” her mother said.

“But most of the time she’s very determined. And she is gracious to everyone. She thanks the people who wake her up to take her medication. She thanks the people who put IVs in her.

“She’s always concerned about me and her dad — and her brother. She knows this has disrupted his life, too. Whenever she gets a card or something, she says Dylan should get one, too.”

‘For I am with you’

Ali had announced the start of her struggle herself, writing in a CarePages journal that would become her mother’s place of prayer, support, reflection and venting over the next 1,200 days.

“Hi, this is me, Ali,” the child wrote in that first post, shortly after 9 p.m. on March 16, 2007.

“I found out today that I have leukemia. I felt scared, but I know God was with me.”

A day later, Ali posted again.

“I am not as scared anymore about having leukemia because they have a treatment for it. On Monday, I have to get a port in my chest to get medicine.”

Karen provided the first of many updates on March 19.

“We’re all doing as well as can be expected,” she wrote. “Everything is a blur, with so many procedures and decisions and information, that there really hasn’t been time to soak it all in yet.

“Ali is so strong and sweet. She wants to know the details of everything, yet she knows to tell us when she needs a break to do something fun.”

Ali won that first round against cancer, but only after enduring eight cranial radiation treatments, 638 days of chemo, 13 months in a “turtle” brace for her back, four strokes, 72 days in hospital, 24 round trips from Grand Forks to Rochester, 20 visits with a psychologist and 34 visits with a physical therapist.

She was fed more than 9,500 pills and often felt “yucky” — or worse. She missed most of fourth, fifth and sixth grades, and three times she lost all her hair — once long, luxuriant brown hair she had been growing to donate to Locks for Love. Before she knew she was sick, Ali wanted to provide hair to make nice, reassuring wigs for other sick children.

‘How do I tell her?’

The Borgens were told that Ali’s type of leukemia has a cure rate of 80-85 percent, and treatment usually takes 2-2.5 years.

She had what was supposed to be her last treatment on July 13, 2009, and — cancer-free — she threw herself back into the joys of childhood: playing basketball and volleyball, practicing the clarinet, resuming friendships, playing with Daisy, going to school, sitting down to dinner with her parents and big brother.

In September 2009, a proud and buoyant Ali led the Grand Forks City Council in the Pledge of Allegiance as Mayor Mike Brown declared childhood leukemia awareness month in the city. Ali and her mother also traveled to Bismarck to lobby state officials and legislators about cancer awareness and the need for funding for research.

And then …

“One afternoon in January, she was playing basketball and she got winded after just two minutes,” Karen said. “I felt sick to my stomach. Something was wrong.”

She mentioned her concern to the doctors. “But they thought it was nothing. ‘It can’t be leukemia,’ they said.”

Ali continued trying to reclaim her life. But in late April, as she participated in a minicamp for the Grand Cities Children’s Choir, she missed a step leaving Grand Forks Central High School, and her foot came down hard. The jolt brought the return of her old nemesis, agonizing back pain, and doctors examining her in Grand Forks again found compression fractures of her vertebrae.

“In early May, a doctor called Ali’s hospital room and said two of her labs were ‘off.’ And he said they thought it was leukemia,” Karen Borgen said.

“I dropped to my knees.”

As devastated as she was, she knew that Ali, who had been through so much already, would be heart-broken.

“How do I tell her? How do I tell her it’s back?”

Ali’s dream

On May 7, Karen and Ali were flown back to Rochester. Except for a few days in August when the family was reunited at home in Grand Forks, mother and daughter have been there since, alternating between the clinic, the hospital and the Ronald McDonald house. Rich and Dylan visit when they can. So do Ali’s grandparents.

They were all there for Thanksgiving.

“We awoke to snow, marking the beginning of our fourth season in Rochester,” Karen wrote on Ali’s CarePages site. “It’s almost unbelievable to think that we arrived when the trees were budding. …

“Ali was miserable Thursday morning, with headache, aches, nausea and fatigue. … Sweet Ali cried because she didn’t feel well enough to go downstairs to eat. She said she felt bad for ‘ruining’ our day.

“We told her that she could never ruin our day, that we were happy to be with her and to be together — wherever that may be.”

Ali had been considered high-risk when she went through treatment the first time. Now she began a second round of chemo and total body irradiation as the family waited to see whether she qualified for a bone marrow transplant and whether a donor could be found.

“She underwent the most rigorous treatment they had available,” Karen said. “Doctors said the treatment itself could kill her.”

On Sept. 11, six days after her 14th birthday, Ali received the bone marrow transplant. The operation went well, her mother said. And a new countdown began: 100 days.

“Ali still has a long road ahead of her with physical therapy, her back healing, getting strong enough to walk again, catch up on school work,” her mother said. “But if there is no leukemia (when the bone marrow biopsy is done later this month, 100 days after the transplant), we can go home and start figuring out what ‘normal’ is again.

“Ali doesn’t usually remember her dreams,” Karen said one day last week. “But she dreamed last night, and she remembered. She dreamed she had hair. She had no back brace, and no wheelchair. She dreamed she was a normal kid, going to school.”

Reach Haga at (701) 780-1102; (800) 477-6572, ext. 102; or send e-mail to chaga@gfherald.com.

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