Baby Mike's story, as told by his father Michael Burns
Two weeks after entering this world happy and healthy, Michael Burns became lethargic, pale, and unable to keep any fluids down. My wife and I were bringing him to his pediatrician every other day, desperate to figure out what was wrong with him. After two weeks of worry, our worst nightmares became our reality when a visit to Michael’s pediatrician ended in a trip to the emergency room.
Staff at the local emergency room worked to stabilize Michael. Doctors were unable to find any answers from his puzzling lab results and vitals. We made the decision to send him to Tufts Children's Hospital.
The first night
Michael’s first night in the Pediatric Intensive Care Unit (PICU) was a blur. We went from being able to hold our son in our arms to only able to hold his hand. The nurses and doctors spent the night monitoring Michael – running lines, attaching sensors, drawing blood from his feet and scalp – trying to stabilize him so that they could find answers. It was an awful feeling while our son was fighting so hard.
Around 4 am, while Michael was under sedation and completely unaware of how much trouble he was in, the attending physician told us the gravity of Michael’s situation. Our baby boy was very sick and might not make it to morning.
Meeting the care team
We were devastated when our fears were confirmed: Michael had acute myeloid leukemia.
“Babies don’t get leukemia!”
“The tests must be wrong!”
“It’s not fair! He’s a little BABY, this shouldn’t happen to him.”
Michael’s oncologist, Dr. Jason Law, laid out the treatment plan he would need to make it through his first day and the following months. Our baby would need a PIC line installed and a complete blood transfusion. Later when we met with the oncology team, we were told about the chemotherapy drugs, medications, procedures, blood transfusions, side effects, life during his hospitalization, the long term prognosis, possible long-term side effects, and how we could better equip our family to process the emotions that come with all of it. I almost threw up and my wife was speechless.
We then met with Megan, one of the oncology social workers, who helped prepare us to announce the news to family, friends, coworkers, and most importantly – Michael’s proud big-sister, 12-year-old Brooke.
Every other bad thing that happened in my life paled in comparison to Michael’s diagnosis. I wished I could have traded places with Michael, but I couldn’t. I signed the consent forms. We wanted our son healthy and we trusted our care team to give Michael the shot at life that he deserved.
He's a fighter
Michael’s chemotherapy started that night and went through the Holiday season. The first week of treatment, Michael responded well. His counts dropped from 500,000 to less than 10,000. He kept fighting. Fighting the cancer. Fighting the sedation. He never gave up.
Michael was in the PICU for a week before Brooke was able to visit the hospital. So far, all she knew was her brother was sick. One of Tufts Children's Hospital’s amazing child life specialists took Brooke to the playroom, Ace’s Place, to break the news to her in a way that she could understand. Brooke was able to visit weekly, and the emotional support provided by the child life team was immeasurable.
After his second week in the PICU, Michael was moved to the Pediatric Blood and Marrow Transplant unit. The Pedi BMT became our home for the next five and half months.
Little baby, big personality
We always donated to cancer charities before Michael got sick, but never understood how the money was used to help patients and their families. Now we know. We were able to adjust our work schedules, so one of us was always with Michael.
Michael spent his first Thanksgiving and Christmas at Tufts Children's Hospital, and the nurses and physicians had become extended family to us. Michael – now referred to lovingly amongst Tufts Children's Hospital’s staff and fellow patients as “Baby Mike” – was always happy, despite the terrible illness he had to battle. He had lots of visitors from family, friends -- even the Boston Bruins came by to say hello – but Baby Mike also loved his stroller rides around the Pedi BMT and brought joy to the other patients on the floor.
After five rounds of chemotherapy, Michael was released from Pedi BMT and now comes in for his clinical appointments periodically. He has been in remission since December 2018 and officially completed his chemotherapy in April 2019 at just over 6 months old.
Since his discharge, Baby Mike continues to brighten the day of everyone around him. He is crawling, nearly walking, and hitting all of his milestones. As he grows bigger and stronger each day, his happy smile continues to remind us of what is important in life.