Amazing Things: The Brown Brothers

The night before 17-year-old Mike Brown is to undergo a three-hour surgery, during which doctors at NewYork-Presbyterian/Columbia University Irving Medical Center will extract bone marrow to give to his brother, Steve, 18, the brothers are lying in their hospital beds, Xbox controllers in hand, playing a game of FIFA.

What’s remarkable, besides their relative calm, is that three years earlier, it was Mike whose life hung in the balance. “NewYork-Presbyterian saved Mike’s life, and I knew the best-of-the-best doctors and nurses were here and would save Steve’s life, too,” says Tara Brown, the boys’ mother.

After being diagnosed with a life-threatening heart condition when he was 8 years old, Mike underwent open-heart surgery to treat an atrial septal defect, a congenital heart condition in which there is a hole in the wall between the heart’s upper chambers. The surgery, in January 2006, was done at NewYork-Presbyterian Morgan Stanley Children’s Hospital.

Then, in 2011, Mike suffered a concussion while playing basketball, causing strange neurological issues that left doctors stumped. Desperate for answers, the family came back to NewYork-Presbyterian, where Dr. Claudia Chiriboga, a specialist in child neurology, successfully diagnosed and treated Mike for confusional migraine syndrome, which he eventually grew out of, allowing him to no longer require medication.

“I thought Mike’s heart surgery and everything that came after his concussion was the worst thing we’d have to go through,” says Tara. “It’s crazy how things can change your life so quickly.”

As a high school senior, Steve was practicing with his team for the Robeson Classic, an All-Star football game, when he suddenly felt dizzy and winded. When he had to stop for air, Tara became alarmed.

“That’s never like him,” she says. “He always pushes himself like crazy, so I knew something was wrong.”

The next day, Tara took Steve to see his pediatrician, who, after running his blood work, discovered an extraordinarily high white blood cell count. Steve was sent to a hematologist.

Early on May 30, 2014 — a week before Steve’s 18th birthday and two weeks before his high school graduation — Tara and her husband, Scott, received grim news. Steve had leukemia. Tara doesn’t recall much from that initial conversation with the hematologist.

“I remember my husband kept asking to explain it again, but I just wanted to get to Steve,” she says of her son, who remained in the waiting room. “I felt so bad he was sitting out there by himself, figuring this probably wasn’t good news if they pulled us away from him.”

Though he needed more time to confirm the type, their doctor was fairly certain that Steve had acute lymphoblastic leukemia (ALL), a fast-growing cancer of a type of white blood cells called lymphocytes. Normal lymphocytes help the body fight infection, but in those with ALL, immature lymphocytes reproduce rapidly and are cancerous. Once Steve was brought into the room, the hematologist explained that ALL was much less aggressive than acute myeloid leukemia.

Steve responded, “Oh, I’m really lucky, then.” “Honestly at that moment I couldn’t believe he would consider himself lucky in any way. He was so positive, it was amazing,” Tara says.

Steve, who was immediately hospitalized at a treatment center near his home in West Caldwell, New Jersey, would need that positive spirit in the days, weeks, and months ahead. While his friends celebrated their last weeks of high school together, Steve was in the intensive care unit undergoing chemotherapy and, later, full-body radiation.

One hurdle cleared, another arose that summer when more tests proved that Steve’s ALL was a rare subtype and associated with poor chances of being cured. His only option for survival? A bone marrow transplant to replace the diseased blood-forming cells with healthy stem cells, wiping out the leukemia and significantly reducing its chances of coming back.

The family braced for bad news. Though there was a 25 percent chance that his brother, Mike, would be a match, in order to be a donor, Mike’s levels of human leukocyte antigen (HLA), a protein found on most of the cells in your body, had to match his brother’s. A close HLA match makes it more likely a transplant will succeed.

Luck was on the family’s side — Mike was a perfect match.

Because the transplant wasn’t available where Steve was being treated, the family considered a number of facilities in New Jersey, New York, and Philadelphia before choosing Dr. Prakash Satwani, a pediatric hematologist-oncologist at NewYork-Presbyterian Morgan Stanley Children’s Hospital and an associate professor of pediatrics at Columbia University Irving Medical Center, Division of Pediatric Hematology/Oncology/Stem Cell Transplantation, as their transplant physician.

“Dr. Satwani was the transplant doctor who gave us the most hope for the future,” says Tara. “I realize now that the transplant doctors needed to prepare us for the worst and all the horrible things that could happen, but Dr. Satwani was able to explain all that to us yet be incredibly positive at the same time. I can never thank him enough — not just for saving Steve’s life but for saving his way of life. One of my fears was that this would change him, his personality. Steve had always been such a happy, positive person, and I believe, because of Dr. Satwani’s bedside manner and disposition, Steve is still that happy, positive guy. It was that, plus the fact that NewYork-Presbyterian had saved Mike’s life — I knew this was where we needed to be.”

Before the transplant could take place October 2, 2014, Steve had to be in remission. He was admitted a week before the transplant to start preconditioning — which meant getting whole-body radiation and a very high dose of chemotherapy to prepare his body to accept the healthy bone marrow. The preconditioning left Steve incredibly sick and destroyed his immune system, so to reduce risk of infection, he had few visitors.

“The night before the transplant was actually my favorite night of my stint in isolation,” says Steve. “I had barely been able to see my brother, so that night we got to hang out and play Xbox. It was the closest I felt to being home during that process.”

“One of the many hard things about a bone marrow transplant is the isolation,” says Tara. “Usually when admitted for a hospital stay, you have many visitors. Unfortunately with a transplant, you don’t have much of an immune system so you really can’t have any. It’s a very lonely process.”

Given Mike’s heart defect history, his medical team wanted to make sure he could withstand three or four hours of general anesthesia, which was needed for the bone marrow harvest.

An athlete just like his brother, Mike recovered quickly after donating bone marrow and was playing point guard for his high school basketball team a month later. But the gravity of what he did for his brother still hasn’t fully set in.

“I never really knew how much of an impact giving my bone marrow had until about a month or two after the procedure, when someone told me I saved my brother’s life,” says Mike. “I was a little taken aback by that comment, because at the time I didn’t think what I was doing had that much of an impact. I still get taken aback a little when someone tells me I saved my brother’s life.”

Giving back comes naturally for Mike. Years earlier, after his heart surgery, Mike had raised money and donated portable gaming systems and DVD players to Morgan Stanley Children’s Hospital, where he had been treated, through his Mike Brown’s Make It Better Foundation.

“I was inspired because I had been in the hospital before and I knew how much harder hospital visits are when you don’t have fun distractions around you,” he says.

Just before the bone marrow transplant, Tara saw these “Wiis on Wheels” — complete with Mike’s Make It Better sticker on the side — on the same floor where Steve was receiving his treatment. This was a moment she describes as “a sign from the universe that everything was going to be OK.”

The transplant was a success, and Steve was discharged from the hospital a month later. While he had several more hospital stays for fevers and infections in the weeks and months to come, according to Dr. Satwani, Steve recovered very quickly.

“That obviously had to do with his physical strength, mental strength, and great family support,” says Dr. Satwani.

Steve’s friends joke that he started visiting colleges in the eighth grade, and Steve says they’re not far off. So when his friends started leaving for school while he prepared for his transplant, he grappled with feeling happy for them as well as angry and frustrated.

“I worked very hard in high school, and had anticipated going away to college for a long time, so I was very disappointed,” he says. His years of football training came into play. “While my friends were away at school, my mission was to put my head down and grind through the transplant process so that when they came back, I’d be healthy and able to go to college.”

At first, Steve hung on to his plans of playing football at Lehigh University, which had recruited him before he became ill, but he soon realized that his life had started down a new path.

“Ultimately, I knew it would be challenging to move on from my illness and create a new identity at Lehigh after everyone was so supportive of me there,” says Steve. “Deciding to go to school somewhere other than Lehigh was the hardest decision I’ve ever had to make. But I really wanted to start fresh, so I decided to apply to University of Michigan.”

He was accepted in March 2015 and by August was headed to the Midwest. Tara recalls how helpful Dr. Satwani was throughout the process; he was available to the family 24/7 by phone and text, and even connected them with an oncologist friend who worked at the University of Michigan Medical Center.

“That made me feel better that, should anything happen, he was there,” says Tara. “It was really hard for me seeing Steve go so far away. At this point, he still didn’t have a complete immune system and was in the process of being revaccinated. But, thankfully, he did pretty well.”

The brothers are now both juniors. Steve is studying finance, with a minor in writing — and has written about his experience — and Mike is studying physical education at Montclair State University. They are planning a trip to Italy in 2018, just the two of them, to celebrate Mike’s 21st birthday.

Since the transplant, Steve sees Dr. Satwani about once a year, along with a number of other specialists and has had only a few setbacks, including being treated for cardiomyopathy, a condition in which the heart muscle becomes enlarged. In Steve’s case, it was related to the chemotherapy he had received.

“All things considered, Steve is doing extremely well,” says Dr. Satwani. “He was very upbeat that he was going to get better, that he will remain leukemia-free. That positive attitude, with his ability to understand and follow instructions, made a huge difference.”

“Dr. Satwani is the first on Steve’s wedding guest list, whenever that happens,” Tara says and laughs. “I could never repay NewYork-Presbyterian — they have literally saved both of my boys!”

The whole experience has made the entire family grateful for the little things.

“Being a bone marrow donor has made me stronger as a person, now knowing what type of an impact it has on people,” says Mike. “I find myself not stressing about little things anymore, because I know things can be a lot worse.”

Although his life looks far different than he imagined, Steve couldn’t be more thankful for this second chance at life. “Mike will never be able to understand how much he truly means to me,” he says.