Lasting impressions: Michael Link puts kids first, yet feels parents’ pain

Every doctor carries at least one patient in his or her head—a memory of a difficult case, perhaps, or of a tragic outcome. And sometimes there’s a patient who simply touches the heart. This is one in an occasional series about the patients they carry.

When pediatric oncologist Michael Link, MD, first met Dianna Goldberg in February 1984, he soon realized that the timing of the young woman’s cancer diagnosis could not have been worse.

Dianna had stage-4 Hodgkin's lymphoma, a blood cell cancer. The cancer had spread widely. Although the best treatments then available had a better than 70 percent chance of success, Dianna’s case “was hardly a slam dunk,” said Link, now chief of the Division of Pediatric Hematology/Oncology at the School of Medicine and director of the Bass Center for Childhood Cancer and Blood Diseases at Lucile Packard Children’s Hospital.

Link also sensed tension between the girl and her mother, Honey. Mom wanted to be involved in every aspect of decision-making about her daughter, just as 14-year-old Dianna yearned for independence. Dianna’s friends were at home in Denver, enjoying new freedoms. Instead of exploring the world, she was stuck in a tiny room in the Stanford Ronald McDonald house with her mom, being poked and prodded at dozens of appointments, struggling to handle the sometimes-conflicting fears she and her mother felt about her disease.

Link enrolled Dianna in a clinical trial of the newest Hodgkin's lymphoma treatment, much of which she was able to receive as an outpatient at Stanford, as well as at home. Her cancer responded well. She recovered, finished high school and went off to college at Dartmouth. Yet when Dianna had follow-up appointments with Link, her mom continued to accompany her, despite Dianna’s desire to be independent. “She used to say to her mother, ‘I’m an adult!’” Link remembered.

Although he sympathized with Honey’s worries for her daughter, Link felt strongly that his first duty was to Dianna. At one of her appointments, Link noticed the young woman was dangerously thin. Weight loss can warn of recurrence of Hodgkin’s lymphoma, but she didn’t have any other signs of returning cancer. He worried Dianna was taking extra doses of her thyroid drug to control her weight. “It took all my medical detective work to catch up with her,” Link said.

Link ordered a surprise blood test to check the medication level. His suspicions were correct. Dianna needed the thyroid drug to compensate for radiotherapy damage to her thyroid, but too much medication was dangerous to her heart. Link called her at college, and they had a serious one-on-one talk. “I had to tell her she was going to kill herself,” Link said. Dianna stopped overusing her medication.

After that, Dianna stayed healthy. Link was thrilled to hear from her about other successes, too: graduation from college, an internship at ABC News, law school, marriage. “You root for these kids and you want them to grow up,” he said. “A few of them really become part of your life.”

Now, when Link first meets adolescent patients, he tells the teens and their families about Dianna and her mom. “I make a deal with my patients,” he said.

Like Dianna, most Hodgkin's lymphoma patients don’t need much hospitalization, and they’ll be able to live fairly normal lives during treatment—if their parents can let them go. Yet his adolescent patients often complain that their parents’ restrictions make cancer feel worse than it has to. Link tells them to stick with the cancer therapy, and “I will do everything possible to advocate for you to your parents so your parents will lighten up.” He holds up his end of the bargain, encouraging parents to let their kids attend school, go to the prom, enjoy ordinary teenage freedoms and fun. “As the doctor, you’re on the patient’s side, you’re their advocate,” he said. “I tell the family, ‘You’re not my patient, your child is.’”

Still, Link is, himself, a parent, and he understands the challenges that a mother and father face when their child is in harm’s way. A few years ago, Dianna surprised Link with a visit to show off her new baby. Chatting with the proud and happy new mother, Link asked her what she would do if her baby were diagnosed with a serious illness. “I’d throw myself in front of a train to try to stop it,” Dianna told him.

“Now you understand what all parents understand—that you always love your kids more than they love you back,” Link said gently. “Maybe you should go call your mom and apologize.”

 

By Erin Digitale

 


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