When 5-year-old Micah was diagnosed with stage four Adrenocortical carcinoma (ACC), he was given a discouraging prognosis: less than a 10% chance of survival. His parents made the difficult decision to uproot their family from the Tampa area to seek medical treatment more than 800 miles away in Memphis at the onset of the COVID-19 pandemic.
Micah’s parents, Bobby and Heather, found themselves in a new city juggling the needs of their seven children (Jeffrey, Holland, Skyler, Asher, Micah, River, and Haven), one of whom was fighting for his life.
In November 2022, we launched a series on parent caregivers for National Caregiver Month. Caring for children with complex medical needs impacts caregivers’ emotional, mental, and physical health. These stories will shine the light on the unique challenges these families face so that communities can better provide empathy and practical support.
From Pizza Night to a Daunting Diagnosis
In late December of 2019, children’s pastor Heather was enjoying the fellowship of friends, while Bobby was at home having a movie night with five of their seven children. At the time their children ranged in age from six months to 15 years old–a busy mix of children in the various, unique stages of infancy, toddlerhood, school-aged, and the teen years.
Five-year-old Micah began to complain of stomach pain which Bobby initially dismissed as a bellyache after eating pizza. Micah became nauseous and soon he was crying uncontrollably writhing in pain. Bobby, now suspecting appendicitis, quickly loaded the children in the van– their preschooler barefoot wearing only a diaper– and rushed to the hospital where Heather met him.
After an ultrasound, a doctor asked to speak to Bobby and Heather privately, away from their other children. “I remember thinking to myself, this isn’t going to be a good conversation,” said Bobby.
The doctor told them that Micah had a softball-sized mass on his left adrenal gland. Then Heather accompanied Micah by ambulance to a larger hospital in Tampa. Within the next 72 hours, he would be both diagnosed with stage 4 Adrenocortical carcinoma (ACC) and have surgery to remove a large tumor.
While ACC is most common in children between the ages of 2 and 11, it’s still incredibly rare, affecting only 5,000 people in the U.S. The hospital had never treated a patient with this diagnosis, and Micah’s cancer had already spread to his lungs. “As a dad and a mom you’re trying to figure out ‘what do we do from here?’,” says Bobby.
Ultimately he and Heather decided to seek treatment at St. Jude Children’s Research Hospital which set in motion a series of sudden changes for their entire family. These included negotiating a job transfer for Bobby, pulling their children out of school, packing up all of their belongings, and buying a new home in the Memphis area, where they knew no one.
Bobby describes this period as “being in a fog.” Their children dealt with a mix of “disbelief, anger, sadness–every emotion you can imagine” as they left behind their community and home of eight years. And they were moving to a new city at a time when the world was locked down by the COVID-19 pandemic. And Micah’s vulnerable immune system meant the family had to be incredibly vigilant about exposure to any germs.
The Cost of Caregiving on Parents (and Siblings)
On any given day, managing the practical and emotional needs of a healthy family of nine is a great task. When you consider one of them is a small child receiving a grueling course of chemotherapy to fight advanced cancer, it’s overwhelming.
Micah’s illness also meant sacrifices for his siblings. Bobby gets emotional when reflecting on it.
Holland, who was then 14, moved to Memphis with Heather and Micah several weeks ahead of the rest of the family to be another set of hands in his care. Jeffrey spent his 16th birthday on the road when Bobby moved the rest of the family from Tampa to Memphis. Their youngest six-month-old, Haven, was breastfed, and “all of the sudden mom’s not there.”
Some of them, along with their parents, are still processing the trauma of a brother who is critically ill and the strain that was inflicted on their family.
Bobby would go to the hospital every day to check on Micah, leaving with breast milk that Heather had pumped for Haven.
“We ended up becoming good multitaskers. It was dividing and conquering any and all situations as best as we could,” reflects Bobby. “The few problems we ran into was when Micah was still in treatment we didn’t know what the outcome would be.”
Bobby admits that the fear he had around Micah’s diagnosis and the stress of caregiving sometimes got the best of him. This included saying some things he now regrets. “There were plenty of times I did not get it right,” he says.
A Sprinkling of Sunshine for All Nine
During Micah’s treatment at St. Jude, a social worker could see that Heather and Bobby were struggling under the weight of his diagnosis, the demands of caring for seven children, and the burden of two mortgages as they had not been able to sell their home in Florida. She connected their family with Spreading Sunshine, who came alongside them to help with their spiritual, emotional, and practical needs. Bobby describes Spreading Sunshine as a “breath of fresh air in the midst of the storm.”
Executive Director, Diane Smith, and the team wanted to serve Micah’s entire family, especially his siblings and asked them each to create a “sky’s the limit” wish list to lift their spirits.
Through generous donors, Jeffrey was treated to a custom-built computer system where he could game. Skyler and Holland received vocal lessons. Holland was able to pick up a skateboard deck and gear from a local shop. Even Bobby was treated to a pair of shoes.
“Dads and siblings are usually not a focal point of the process,” he says. “The look on their faces…it was finally an “I matter too moment. I am going through this and someone notices me.’”
Bobby and Heather have volunteered their time to Spreading Sunshine. “If I truly believe that God is who He says He is and He healed my son then part of my obligation as His son is to give back,” explains Bobby.
He appreciates the opportunity to encourage other parents of children facing serious illnesses. “Sometimes you don’t just need stuff. You need someone who cares.”
Scanxiety: Life After Cancer Treatment
Nine months after beginning his regimen of inpatient and at-home chemotherapy, it was declared that Micah had NED, “no evidence of disease.” While ACC has a high recurrence rate before 24 months, Micah continues to beat the odds.
He still receives supplemental nutrition through a G-Tube, as well as mistletoe extract injections, Epsom salt baths, and red light therapy to maintain his health. Like many seven-year-old boys, Micah enjoys soccer, drawing, and Minecraft. He’d like to play on a soccer team one day, however, that will require fully transitioning him off of his G-Tube as there is a risk of it becoming dislodged if he collides with another player.
While the family has since moved to South Carolina, Micah continues to return to Memphis for quarterly scans. Despite believing that Micah has been healed, Bobby shares that these scans trigger, “scanxiety,” where he has moments of “literally reliving every moment back to day one and the fear associated with that.”
Still, he chooses to focus on the blessings. Micah’s miraculous victory over stage four cancer. Being able to work remotely. Having dinner with his family. He describes their life as “happy chaos.”
Spreading Sunshine to Children and Caregivers
Spreading Sunshine has always understood that childhood illness impacts the entire household. It puts a strain on their parent caregivers and siblings. This is why we come alongside the entire family, providing practical, emotional, and spiritual support.
You, your business, or your organization can join us in showing kindness to a family like Micah’s. Opportunities include sponsoring a Sunshine Box or a Year of Sunshine or making a general donation to meet tangible needs, or buying meals for a family. Be someone’s sunshine today.