It wasn’t supposed to be a puppy.
Not that he didn’t love puppies. But what 9-year-old Mateo Goldman was really hoping for when he was referred to the Make-A-Wish Foundation in January 2018 was much more unusual than a pet.
Make-A-Wish grants wishes to critically ill children, and 14 months earlier Mateo had been diagnosed with leukemia. Most kids in his situation ask for trips to Disney World, computers, gaming systems, online shopping sprees, playhouses, or room redecorations. Or puppies. Mateo’s request was the kind that Make-A-Wish Massachusetts and Rhode Island doesn’t often receive.
His one true wish was to meet his stem cell donor from Germany. “Technically,” Mateo said, “I’m me on the outside, but on the inside I’m her.”
That was then. Now, technically, he’s his older brother, Leo, on the inside. And since being diagnosed with cancer in 2016, his everyday wish has been just to be at home, surrounded by family and able to sleep in his own bedroom, where he keeps his personal shrine to his life’s most meaningful people and moments.
Mateo’s indefatigable — a gregarious prankster who loves sports, art, costumes, The Office, Minecraft, and pretty much everyone he meets. But he was dealt a catastrophically bad hand at age 8 when his cancer was diagnosed. It was “probably the most common cancer we see in children,” says Dr. Joelle Straehla, his pediatric oncologist. “Greater than 90 percent of children are cured.”
Yet no one, not his doctors, not his parents, could anticipate what lay ahead for Mateo.
Mandy Goldman, Mateo’s mother, is my hairdresser, and I’d gotten to know her close-knit family when I wrote a Globe story about her 90-year-old grandmother, the owner and operator of Franny’s Beauty Shoppe in Natick for 65 years. Mandy and her husband, Nick, a software engineer, had four high-spirited kids between the ages of 2 and 10, and I always looked forward to my hair appointments so I could hear about their latest escapades.
When I saw Mandy in June 2016, she told me about a monumentally chaotic morning earlier that week. During the rush to get out the door for school, her eldest son, Leo, had hurled a roll of duct tape across the room and it smashed the fish tank. Mandy spilled her coffee on a form she’d signed for Mateo’s teacher. Mateo started complaining that he couldn’t walk, so on the way to school she let him sit in his 2-year-old sister’s stroller as she balanced Violet on top of the sun visor, holding the toddler as she pushed them along. Then Mandy’s romper outfit malfunctioned, and started to slip down. We both howled with laughter.
But it turned out not to be funny.
In hindsight, over the next couple of months, Mateo was “not himself,” Mandy says. He complained that his shoulders and belly hurt. He lost weight and ran a fever. She took him to the doctor four or five times but was told he was fine. One weekend in November, after Mateo’s basketball tryout at a gym in Jamaica Plain, someone asked Nick if Mateo was OK — they’d noticed his skin was a little green. That night, Mateo threw up.
Early the next morning Mandy drove Mateo to the emergency room at Boston Children’s Hospital, where his blood was tested. Even before the moment when a doctor came in wearing a tag that said “Oncology,” Mandy knew it was cancer. She tried to call Nick but couldn’t remember at first how to use a phone.
I had lunch in a Brookline restaurant with Mateo and Mandy last January, not long before the COVID-19 lockdown. By then Mateo was an engaging 11-year-old — happy, strong, funny, hungry, eager to talk about his experience, and at times sounding and behaving more adult than childlike. He told me that he is “definitely more mature” because of his cancer experience, and has an easier time talking to grown-ups than to kids. “We have more in common,” he said. “I kind of think it’s because they’re more mature.”
“Do you remember when we told you [that] you had cancer?” Mandy asked him. Her eyes welled up at the memory of it and Mateo looped his arm around her and patted her shoulder.
“Yeah,” he said. “You were crying. Dad was crying — and he never cries. I knew something was up but I didn’t really know what it meant.”
It meant he had B-cell acute lymphoblastic leukemia, a fast-growing blood cancer: His body was making abnormal white blood cells called lymphoblasts in his bone marrow, the spongy tissue inside his bones. Lymphoblasts don’t fight infections well, weakening the immune system. They also proliferate quickly and crowd out the healthy white blood cells in the bone marrow — which is why Mateo was so achy. The treatment is usually two years of chemotherapy.
Nick had raced to the hospital, where he and Mandy tried to absorb what they were hearing. They could barely digest what the doctors were saying. “They were expounding on B-cells, it’s 90 percent curable, you’re in the best hands, there are psychologists available, do you need us to take your blood pressure?” Nick recalls.
There was no time to lose: Mateo was immediately whisked to the pediatric oncology floor and the ordeal began. Doctors performed a lumbar puncture, inserting a thin needle in the lower part of his spine to remove fluid and look for evidence of leukemia. He had a bone marrow biopsy. A PICC line was inserted in his arm, then a 30-day course of powerful chemotherapy drugs began. He wouldn’t be home for Thanksgiving.
What followed was “horrible to watch,” Nick says. Mateo had constant nausea, bouts of vomiting, an itchy rash, mouth sores, and other miserable side effects, including losing his hair. He was given other drugs to counter the effects of the chemo.
Yet he stayed positive and upbeat, says Mandy, who has documented her son’s experience on social media since his diagnosis. In a photo of a bald Mateo around Day 10, he’s posing with his legs folded into a Buddha-like lotus position. “I think this was supposed to happen to me so I could find my true self and inspire other people,” he told his mother afterward.
The treatment was meant to kill all the cancer cells and get Mateo in complete remission in 30 days. It “starts out intensive and gradually gets less intensive,” Dr. Straehla explains. If all went well, Mateo would be tested and home by Christmas 2016, followed by two years of outpatient treatments.
Mateo did get home in time to celebrate Christmas Eve. The next day, after opening presents, the family headed to his great-grandmother’s for a meal. “Then we got the dreadful call,” Nick says. Test results showed there was still leukemia in Mateo’s bone marrow. He spent Christmas night — and the next three weeks — in the hospital.
Doctors told the Goldmans that Mateo’s best hope for a cure was a stem cell transplant to replace his unhealthy, blood-forming cells with healthy ones from someone else. “We were devastated,” Mandy says. “We knew it was the worst-case scenario. At first they tell you it’s the most curable kind of cancer, and then you find out you’re going down a different path.”
What’s more, tests showed that no one in the family could donate their stem cells to Mateo. The protein markers in the donor’s cells — human leukocyte antigens, or HLA — had to closely match the protein markers in Mateo’s to minimize the chance of rejection and other complications.
The hospital’s search team entered his data into a worldwide registry of potential donors. Good news was not certain: About 10,000 patients in the United States each year have no match available to them on the registry, according to Be The Match, a nonprofit that maintains the national donor registry for patients in the United States.
But there was one — only one — who could fully match Mateo.
In October 2016, around the time Mateo was showing early symptoms of cancer, a young German woman in Frankfurt named Laura Sütterlin was grumpily watching her then-husband compete in a paintball match. She didn’t particularly approve of this shooting sport.
Getting bored and hungry, Laura wandered away to find something to eat. She found herself at a kiosk set up by the Stefan Morsch Foundation, where a man was recruiting volunteers to join a registry of potential bone marrow and stem cell donors. He smiled and teased he’d give her a bar of chocolate if she’d register as a donor. She would just need to swab her cheek for a DNA sample.
Laura didn’t hesitate. Like many young Germans, she was familiar with how stem cell donations help people with cancer and other life-threatening blood diseases. Their country has a robust donor recruitment campaign: kiosks are a fixture at athletic events, exhibitions, schools, and other locations, and public service jingles that urge people to be donors are ubiquitous. “Think about how many people we have on the planet,” Laura says. “If everyone would potentially donate [stem cells] when they turn 18, think of how many lives could be saved.”
Three months later, Laura got a phone message and e-mail from the Stefan Morsch Foundation: She was the best match for a patient who urgently needed a stem cell transplant.
Laura underwent the procedure to extract marrow from her pelvic bone at a hospital in Wiesbaden, Germany, on March 13. Afterward, the doctor told her the bone marrow was on its way to the United States to help save the life of an 8-year-old boy. “I was super happy to support a child,” Laura says, “but sad that such a little body would have to experience such treatments.”
Mateo found a bright spot in all this when he met a 10-year-old boy named Jordan Kim, also a patient at Boston Children’s. Jordan was being treated for aplastic anemia, a rare disorder in which the body stops making new blood cells. The two boys met soon after Mateo was first hospitalized in 2016, and they “clicked instantly,” says Jordan’s mother, Lynn. This meant a lot to Mateo.
“Most parents [of pediatric patients] don’t want their kids to become friends with other kids because they might die,” Mateo says. “That’s like saying, ‘Don’t have kids, they’re going to die.’ Everybody is going to die someday.”
Mateo and Jordan hung out in each other’s rooms, playing video games and using Jordan’s remote-control car to chase nurses down the hall. Once they got in trouble for concocting an explosive soda geyser of Diet Coke and Mentos in another patient’s shower stall. “All the nurses said we looked like two old men,” Mateo says. When they couldn’t be together, they’d FaceTime to see how the other was feeling. They called each other BFFs.
But the time for Mateo’s stem cell transplant was approaching. His transplant doctor, Christine Duncan, does not sugarcoat what her young patients endure. “You have to walk through fire to get through the other side of it,” says Dr. Duncan, director of the inpatient transplant service at Boston Children’s Hospital, which treats pediatric cancer and blood disorders in a joint program with Dana-Farber Cancer Institute.
To start, the old immune system is wiped out with a one-two punch of chemo and total body irradiation. “The doses are so high that if you don’t give them cells to rescue them, they won’t recover on their own,” she says.
The transplant was scheduled for March 14, 2017, the day after Laura donated her stem cells in Germany. A volunteer courier made the round trip from Boston to Wiesbaden, landing at Logan International Airport during a blizzard that brought 2 feet of snow. At Boston Children’s, Laura’s cells were infused into Mateo through the intravenous catheter in his chest. Brutal side effects followed: fevers, elevated blood pressure, infections, sores in his gastrointestinal tract, nausea.
Then, on May 8, his friend Jordan died. Mateo was “heartbroken,” Mandy says. The boys had been inseparable. Even when Jordan needed a transplant and was moved down the hall to a different unit separated by glass doors, they would meet at the doors “and were so happy to be near each other.”
“This is the saddest part,” Nick says, speaking of the cumulative effect of what Mateo has been through. “Kids like Mateo are robbed of their childhood.”
Mateo has missed out on many things, and hasn’t had a full year of school since second grade. Sometimes he was tutored in the hospital, but was often too sick to focus. At home, he tried to keep up by using a remote-controlled robot that moved around the classroom, allowing him to interact with his teacher and classmates, but with limited success. By the summer, though, Mateo was feeling much better. “He is amazing!” Mandy wrote in a blog post. “He is happy, strong and funny. He smiled all day today!”
Mateo returned to school in February 2018, and made headlines when he arrived his first day. Brookline police and firefighters escorted him, and several hundred well-wishers lined the street with balloons and cheers.
But serious problems followed. Mateo developed graft-versus-host disease, an unwelcome side effect of transplantation: The donated cells saw his body’s cells as foreign and attacked them. His body grew stiff and his skin grew tight — so tight “he was solid as a rock,” as his mother puts it. He struggled for months as doctors tried different treatments, until it was mostly under control.
The exchange of personal information between stem cell donors and their recipients is restricted at first, with contact permitted anonymously after one year. After two years — if both people agree — their names and contact information may be shared, says Susanne Morsch of the Stefan Morsch Foundation. Almost exactly a year after the transplant, Laura got a letter from Mateo, forwarded to her by the foundation. It read, in part:
Dear Donor: I can’t wait to get to know you. Here is a little about me … I’m smart and funny and football is my favorite sport. I played football the season before I got diagnosed with leukemia. What is your family like? Love your brother from another mother.
Laura showed me the letter in person. Coincidentally, I had plans to be in Germany in November 2019, and Mandy had encouraged me to meet Laura, who was recently divorced from her husband and living in Karlsruhe, a charming old city on the Rhine in southwestern Germany, near the French border. She shared a cozy apartment with her fluffy white cat, Calimero. Laura was delighted to meet anyone who knew Mateo.
She’d kept Mateo’s letter as a treasure and showed me a photo she took of herself, crying, after she first read it. “In some kind of way, we are connected,” she said. “Part of me lives in Mateo. His body is reproducing my cells, and this overwhelms me.”
Laura is warm, funny, outgoing, not unlike Mateo, with big eyes and a mass of curly black hair. She radiates energy and warmth. She’s traveled a lot and speaks five languages. By the time we meet, she and Mateo have already had several video calls and discovered they share a lot in common, including Italian backgrounds, dark hair, and a love of all things Disney.
She also knew that Make-a-Wish had granted Mateo’s wish to visit her in Germany, and his family was hoping for a trip in the spring or summer of 2020. “I’m super-excited to show them everything,” she said, holding up her squirmy cat and pantomiming: “Mateo, this is Calimero. Calimero, this is Mateo!”
As I prepared for that trip to Germany in the autumn of 2019, good things were happening for Mateo and his family. He was back on the football field. In the winter he joined a community theater and played “Olaf the Boorish” in a production of Yo, Vikings! He started wearing a German-themed T-shirt stamped “Willkommen!”
Mandy and Nick decided to sell their Brookline house, which sat on a busy street and abutted a parking lot. They wanted their kids to have a yard and to give Mateo a fresh start where he could make new friends and comfortably repeat an academic year. In June they moved into a big house with a barn on a large lot in Duxbury, not far from the beach where they’d spent many happy summers at Mandy’s grandmother’s cottage. “We just keep dreaming up stuff we can have and do,” Mandy says. “I think we need goats and chickens.”
After COVID-19 hit, it was apparent that there’d be no trip to Germany for the family anytime soon. Make-A-Wish determined that all travel-related wishes would be indefinitely postponed. They asked Mateo if he wanted to make a new wish. He requested “a double doodle puppy named Cookie.”
At the end of May, Mateo visited Germany — virtually. Laura guided him around the center of Karlsruhe with her smartphone, pointing out highlights such as a 300-year-old palace surrounded by lush gardens, which Mateo pronounced “really cool.” Then he gave her a tour of his house: Moving boxes were everywhere. He showed her the “shrine” on his bedroom wall that holds his keepsakes, including a photo collage of him and friend Jordan. On it, he’d printed and illustrated with hearts: “Jordan + Mateo BFF.”
Laura told him she’s really excited to show him Karlsruhe in person someday. “Maybe not this year. Maybe next year,” she said. “The most important thing is to stay safe and stay healthy, and we’ll have a lot of time left to get to know each other.”
Then, on July 13, 2020, shortly after the Goldmans moved, Mandy dropped some news on Instagram. “I can’t believe what I’m about to post. Mateo relapsed, his cancer is back.”
Second bone marrow transplants are rare. They are even higher risk than first ones, Duncan says, because the patient’s body has already received high-dose therapy, which can cause organ dysfunction or toxicity. And the risk of getting graft-versus-host disease is even greater than the first time.
It would be too risky to use Laura’s stem cells again. But since Mateo’s first transplant, the science evolved — new and encouraging drugs now make it possible to use donor cells that are not as closely matched.
And this is when the family got a second chance at a cure. Laura’s stem cells had given Mateo three more years, until the science caught up and his 14-year-old brother, Leo, could try. On October 22, Leo donated his stem cells at Boston Children’s Hospital.
Earlier that week, Mateo had ordered himself a Grinch costume just for fun and walked the halls to amuse the kids and nurses. He’d been in and out of the hospital since mid-July, with COVID-19 preventing him from having any visitors except his parents. Mateo missed Jordan. He used FaceTime to stay in touch with his siblings and to see his new puppy Cookie, a mix of poodle, golden retriever, and Bernese mountain dog — and Cookie’s sibling Frino, who was too cute to pass up and had also come home with the Goldmans.
I visited Mateo and his family at their new home the weekend before his second transplant — one of Mateo’s few reprieves from the hospital — and asked him how he felt about the prospect of having his brother’s stem cells instead of Laura’s. Did he still feel connected to Laura?
“For now, through my blood,” he told me. “And this might sound cringy, but, emotionally.”
Leo says he didn’t think twice about donating his cells to his younger brother, even after learning that lots of needles would be inserted in his back to collect his marrow. “There was never a point when I thought I wasn’t going to do it,” he says. “I felt it was natural. I wanted to get ‘Teo better.” He and Mateo “are, like, best friends,” he says. He couldn’t wait until Mateo got home, so he could give him a hug.
The second transplant caused problems for Mateo. He developed veno-occlusive disease, a liver complication, but slowly recovered. “It has been difficult,” Dr. Duncan says. And yet, throughout Mateo’s illness, she has been “struck by the generosity of a stranger, the goodness of people, the resilience of this child and family.” And maybe most of all, she says, “Mateo’s ability to retain his spark in the most trying times.”
A month after his transplant, still hospitalized, Mateo reflected on what it means to be “a double Goldman,” as his mother laughingly calls it. “It’s weird to think that Leo’s cells are in me,” he said. “I think it does bring us closer. But it felt, like, normal. I wouldn’t say it was a sacrifice. It was more like a gift, to save your brother’s life.” A gift that brought Mateo home in time for Thanksgiving.
Just before Christmas, almost four years after Mateo’s diagnosis, another gift arrived. Mandy and Nick posted news on their blog: Mateo’s “BONE MARROW BIOPSY CAME BACK CANCER FREE AND ALL LEO!” The transplant from Mateo’s brother had worked.
“Baby steps, baby battles and a total balancing act of meds, patience and prayers. We will get through it!,” the jubilant and thankful parents wrote. “Hug your babies, count your blessings, tell stress to bug off! Smile, laugh and watch The Office like Mateo!”
Bone marrow donors are needed
Some 35 million people have signed up to be stem cell donors on registries around the world, according to Be The Match, the nonprofit group that maintains the national donor registry for patients in the United States. But the group says only 10 percent of Americans even know the national bone marrow donor program exists. “We have our work cut out for us in terms of what it means to donate bone marrow,” says Jamie Margolis, senior vice president of donor services.
The need for stem cells is enormous: 70 percent of patients don’t have a fully matched donor in their family, according to Be The Match. And it’s not uncommon for there to be only a single potential match for a person needing a stem cell transplant to treat diseases and cancers of the blood (such as sickle cell disease, aplastic anemia, leukemia, and lymphoma). Race and ethnicity are important factors; chances of a match increase with shared background. Also, white people are most likely to find a match; Black Americans are least likely.
And about half the time, people who sign up change their minds — the sad experience of 9-year-old Thor Forte of North Carolina who has sickle cell disease. Three years ago his one match on the registry chose not to donate. Living in pain, he waits for a new donor to step forward.
To join the Be The Match registry, visit join.bethematch.org/theglobe, or text “theglobe” to 61474 to receive a link. It’s free to join if you are 18-44 years old (the age range for donors most frequently requested by doctors).