PHOTO COURTESY OF DAVID AND BIRGIT ANDERSON

Birgit Anderson likes to lie close to Kai in his hospital bed. “Whatever happens, I try to remember the moments when I snuggle with him or just give him a kiss,” she says.

Birgit Anderson hadn’t slept all night. But as she lay in the hospital bed one recent Sunday morning, snuggled against the small body of her son Kai, she did not close her tired eyes. Even as the 4-year-old himself drifted off, she watched him, kissed him, and stroked his rapidly thinning blond hair.

“I look at his hair, and his eyebrows, just because I like to look at them,” she said simply. “I just love him so much and I’m so afraid to lose him.”

Last month, Kai Anderson was diagnosed with Philadelphia chromosome-positive acute lymphoblastic leukemia, which is a medical way of saying he needs a bone marrow transplant to survive.

The blood cells that fight infection, clot bleeding, and carry oxygen to cells throughout the body are produced in the bone marrow. Leukemia cells, abnormally generated in the marrow, crowd out the good cells and impede the vital life functions they provide. Kai’s type of leukemia is rare and his hope for life lies in finding a match among potential donors for a bone marrow transplant.

With the support of friends and neighbors, three bone marrow drives for Kai are taking place Downtown this month. (Additional information can be found at www.HopeforKai.com.) More than 1,000 people came to the first one, held at Montessori School of Manhattan on Saturday, May 2.

The devastating diagnosis came early last month after the normally energetic child had been chronically fatigued for weeks, with flu-like symptoms that kept him out of his preschool at Montessori School of Manhattan on Gold Street.

CARL GLASSMAN/TRIBECA TRIB

With dozens of volunteers on hand to help, more than a thousand people came to Montessori School of Manhattan in Tribeca on Saturday, May 2, to be tested as possible bone marrow donors. Other drives in Tribeca were held at Whole Foods and JCP.

“I felt like I was in this dream and I kept thinking I cannot be taking this phone call,” Birgit recalled. “I must be taking a nap.”

It was every parent’s nightmare—times two.

Just a year before, her husband David, now 41, was diagnosed with a different but also rare and often lethal lymphoma.

He tires easily, is stable enough, so far, to avoid treatment. So a year after the diagnosis, the couple was just beginning to find relief from unremitting worry.

“We thought, wow, this is a milestone for us,” recalled Birgit, 36, who just two years ago had undergone emergency heart surgery. “We can finally live life a little bit again and we don’t have to live from doctor’s visit to doctor’s visit, and all the stress from the last year.”

All that ended with the results of a blood test.

“I was just, like, how could this possibly happen in one family, in one year, two things which are rare,” said David, a mortgage analyst in Citigroup’s Tribeca office.

“The doctors, they’ve assured me many times that it’s not genetic,” David continued, his eyes welling with tears. “And that I not feel guilt.”

Father and son are a tight duo, forever talking and playing together—so much so that Birgit calls Kai a “shadow” of his dad.

“We’ve come to terms with the fact that David’s life may be shortened by 20 years,” said Birgit. “But the thought that Kai could precede him is just unbearable.”

Kai is being treated in the pediatric unit of Memorial Sloan-Kettering Cancer Center, where he spent most of last month after being admitted on April 7. (He returned home on April 29 and as of May 15 was in remission.) There he was hit with a powerful “induction” of seven chemotherapy drugs that kill the cancer cells in his bone marrow, and the good cells, too, making him highly susceptible to infection and causing many side effects that must also be treated. In addition to the chemo, he has been taking 17 drugs daily, and has frequent transfusions. In the hospital, a tube connected the intravenous machine beside his bed to a port in his chest.

Not surprisingly, the aggressive treatment has sapped the energy from this robust, friendly kid.

Birgit Anderson takes Kai for a walk in the hall of the hospital’s pediatric floor.

During his time in the hospital last month, Kai would lie listlessly in bed, or nap. But he could perk up at the sight of new drawings from friends, or SpongeBob on TV, or a game with his mom, who speaks with him only in German, her native tongue.

“He is so miserable now,” Birgit said last month as her son lay nearby. “He’ll answer a question but he won’t talk, he won’t smile. I feel like the Kai that I used to know, I’ve left behind somewhere.”

Still, he takes his many treatments with remarkable equanimity.

“It gives me so much strength to see how he’s handling it,” she said. “With such acceptance and dignity.”

Word of Kai’s diagnosis spread quickly Downtown with the help of Anna Grossman, founder of Hudson River Park Mamas. An email blast to her 1,000 members was a call to participate in bone marrow drives that she had hastily organized along with Kai’s school, Montessori School of Manhattan.

JCP Downtown organized a drive as well, much as it did last year for one of its members, Lisa Flynn.

Then there have been the e-mails with advice and support that poured in, the drawings and gifts from classmates, and home-cooked meals dropped off regularly at the family’s apartment building.

“It has completely snowballed with people saying, ‘We want to do something,’” said Miriam Wermelt, who organized the network of volunteers who  bring food to the family’s apartment.

“When you’re going through something like this you feel so alone. It’s so daunting, you don’t know how you’re going to be able to do it,” said David. “Just to know that there’s that network behind you lets you focus on the family and helping your child get through this.”

"I wish i had time to tell people how much it really means to me," said Birgit, who calls the response to Kai's plight "amazing."

Because Kai’s immune system is compromised, there’s little chance to see those friends and neighbors. And lately, the center of the Andersons’ life has been the 9th floor of Sloan-Kettering, sleeping next to Kai on a pullout couch, taking their meals in the hospital, and showering in the one stall on the floor.

Sleep is fitful at best when Kai is there, what with multiple medications administered during the night and the need for nursing staff to unclog, adjust or empty one thing or another every few hours.

David Anderson at the bedside of his son Kai at Sloan-Kettering Hospital. A family member is always at the child’s side.

Then again, it’s never easy to relax, Birgit said, until the doctor arrives on his morning rounds with results from the latest bone marrow biopsy or blood test.

“I’m out of sorts until I know what’s going on,” she said during Kai recent stay. “I worry that every day a complication will come up that I never heard of.”

Luckily, both Birgit’s and David’s mothers handle babysitting for their 2-year-old, Toren, and the grandmas sometimes take night duty in the hospital, too.

But most days and nights this past month it has been Birgit or David by Kai’s side, taking each day and doctor’s report as it comes, each bit of hope where they can find it.

On the phone with David the other day at the hospital, Birgit stood by her son’s bed, at once laughing and crying as they talked.

“David just told me he was here in the hospital yesterday and a little boy who had a transplant walked out,” Birgit reported. “And one of the transplant doctors said, ‘See, people do walk out of here.’”

“It’s so amazing,” she added. “I wish I’d seen it.”