“There’s life before cancer, there’s life during cancer and there’s life after cancer.”
Rosa remembers the day she felt the world stop. “I remember feeling like the ground underneath me was falling apart. Like I was sinking into the ground…being pushed into a dark hole.”
After a long day with her eight-month old son, David, Rosa found herself in a New Jersey emergency room. David’s belly was swelling, he hadn’t been eating and he was tired and pale. The doctor explained that David had cancer—infantile leukemia, specifically. Now she and her husband had to decide what the next steps were for their critically ill infant. Rosa’s next question would change the course of her child’s life and their future together as a family.
“Where should we go?”
The doctor’s answer was confident. He told her she had options, and even listed a few, but there was one place he recommended.
“I think you should go to Delaware.”
As they prepared to transport David to Nemours via ambulance, the nurse walked in.
“When I saw them walk in, I felt peace,” says Rosa, who knew she had made the right choice. “You just feel it.”
The next two years were anything but easy for Rosa and her family. It was difficult to see her son intubated, and hard to be in and out of the hospital, especially during the time of strict COVID-19 protocols. Rosa insists, however, that it was Nemours and their expert pediatric oncology team that made those years bearable, and brought her son out on the other side.
“My son is alive. That goes to show how amazing they were…the nurses, the PICU (pediatric intensive care unit) doctors, the fellows, the residents, every single one of them.”
After about a week, they moved from the PICU to the cancer floor. The New Jersey mother of two had no idea just how much time she would be spending here.
“I pretty much lived with David in the hospital for an entire year,” she says.
When a child is diagnosed under the age of one, protocol requires them to stay in the hospital for every round of chemotherapy. With the children being so young and vulnerable, something as minor as a fever could become fatal if they aren’t closely monitored. Once the pandemic broke out, Rosa and David often couldn’t even return home between rounds of chemo due to the high risk.
“We watched children come and go, but David and I stayed.”
Only one caregiver was allowed to stay with David. Rosa’s husband and seven-year-old daughter weren’t even allowed to visit for six months. She’s grateful for the strict protocols, though. The diligence and precaution of Nemours is just one more thing Rosa considered lifesaving for her son.
In August of 2020, they were allowed to return home. After two months, though, David relapsed and his leukemia returned. This led to another two months at Nemours; another Thanksgiving on the cancer floor, separated from her husband and daughter. After two months, they were told that the current treatment wasn’t working, and they would have to switch to an alternative treatment involving radiation.
“It felt like we could never catch a break,” Rosa admits. “But I always trusted his team. Dr. Gresh was his main oncologist, and I trusted her so much.”
Rosa recalls asking Dr. Gresh if radiation was the best choice for a child not yet two years old. She says it was this trusting and open communication that made her feel so at ease with the oncology team. They were always straight-forward and genuine.
“And they all cared. They truly all care,” Rosa explains. “Dr. Kolb…I could tell so many stories. He doesn’t do things to be recognized.”
She recalls one morning during a period of some of David’s more intensive treatment in the PICU. She awoke to a nurse telling her that Dr. Kolb had been there early that morning, around 6 a.m.
“Why didn’t he wake me up?” Rosa asked. The nurse responded that he had just stopped by to see David. He was just looking at him. He didn’t want to be seen, and there was no particular reason for the visit. He was just there to check in because he cared.
David was discharged after two years in and out of the hospital. Little by little, Rosa and her family found themselves living a normal life. David celebrated a year post-transplant. His hair began to grow back and he started to gain weight. Without a normal childhood, he had some development therapies to help him catch up mentally and socially.
Their now nine-year-old daughter struggles with anxiety after the cancer and the hospital visits. Rosa recalls that in the beginning, she would often ask if they were going to come back when they had doctor’s appointments.
“Other families will agree; there’s life before cancer, there’s life during cancer and there’s life after cancer. Things do get easier,” Rosa says.
This fall marks a year and a half post-transplant. They only have appointments once every three months, and David just started pre-school.
“One of the many miracles God has given me…to see my son go to school. That’s when you finally see…all that time we lived in the hospital, all those days I didn’t see my daughter, I didn’t see my husband. This is what we fought for.”
Caleb was five when he began complaining about pain in his legs.
Naomi, Caleb’s mother, figured he was experiencing growing pains. Aching in a child’s legs at that age is not uncommon. The pediatrician was hesitant to bring him in for tests. With COVID-19 in full swing, parents were encouraged to wait and make sure a condition was serious before bringing their child to a doctor.
Naomi knew there was a problem one evening when the family was at the table for dinner. Caleb’s lasagna, his favorite food, remained untouched. He went to lie down, explaining that he didn’t feel well.
That’s when he started to scream in pain. Naomi knew immediately that this was something serious.
“He has a super high pain tolerance, great kid, super even-tempered,” Naomi recalls. “I knew something was really wrong.”
She was grateful the pediatrician was being cautious given the pandemic, but she told her husband it was time to take Caleb to Nemours.
“I knew something was not right. And I wanted Nemours to take a look.”
They went to the emergency room. With her brother driving and Naomi in the back seat comforting her son, her thoughts were racing. She was thinking of every possibility of what could be causing her child this pain. Naomi is a mother of seven children ranging in age from three to 13. She’s no stranger to the ailments that often befall children. Cancer didn’t even cross her mind.
Nemours was quick to get them into a room. It was clear her child was in a lot of pain, and the medical team wanted to get him checked out quickly.
“It was about one in the morning when the E.R. doctor walked in,” Naomi recalls. “I wish I could remember her name, but I don’t. She was so kind and compassionate but I could see the look in her eye.”
The E.R. doctor explained that the lab results weren’t conclusive, so she didn’t want to go over them yet. There was a doctor coming in to speak with them. She encouraged Naomi to call her husband and ask him to meet them there.
“That was the moment I knew our world was completely changing,” Naomi admits.
Dr. White, a fellow at Nemours, was on call that night. Rather than talking over the phone, he drove in from Philadelphia to deliver the news in person. Caleb’s blood work showed all the tell-tale signs of leukemia.
“I just remember thinking, ‘Thank God that we are at a place where the doctor is so compassionate and has the foresight to know that this is not the kind of news that a parent takes easily over the phone,” she says.
Naomi recalls asking Dr. White if he could be Caleb’s primary doctor. He responded that while as a fellow, he couldn’t be Caleb’s doctor, Naomi had nothing to worry about. Nemours had an amazing team.
“Every step of the way has proven that statement 100-fold,” Naomi says. “The oncology team at Nemours is far and above the best in the country. I don’t care what statistics say or who ranks where. I am telling you as a mom who would do anything for her kid—who without hesitation would get him down to St. Jude or wherever is going to be best—I would not have chosen anywhere other than Nemours for our kid’s care. They always put people over protocols.”
She explains what she means by this. Most types of childhood cancer, especially certain types of leukemia, have accepted protocols in place. Naomi has met many families who say their doctors follow these protocols as closely as possible—doing everything “by the book.”
“They always put people over protocols.”
The team at Nemours looked at her son as an individual. They customized care to fit his needs and specific evolving condition day by day. They tailored every possible aspect to ensure that Caleb would survive and thrive through this fight with cancer.
While this fight came with countless challenges, Naomi and her family did everything they could to focus on the good. Her youngest daughter celebrated her first birthday in the hospital room with Caleb. He decorated the room for it and was so excited to spend the day with her, just a week after his diagnosis. All seven of her children, her husband and their family supported one another through the tough times and looked forward to the good that the future would bring.
Caleb is set to finish treatment on October 22, just one day before the Young Heroes 5K at Nemours Estate.
Caleb is a proud ambassador for the Young Heroes 5K on October 23. The Nemours Center for Cancer and Blood Disorders’ annual fundraiser helps raise funds for not only oncology research, but also sickle cell anemia and other blood disorders that aren’t given the federal funding they need to expand research efforts.
The Young Heroes 5K is open to the public. To learn more about how to donate and get involved, visit the group’s website online.