Jenna and Brendan Baker were faced with the most difficult challenge of their life when their seemingly healthy two year old son was diagnosed with cancer. He went to the pediatrician with a fever that was not responding to the normal remedies. A blood test raised the suspicion for cancer and immediately Henry was sent to the Emergency Department at Yale New Haven Children’s Hospital where doctors confirmed his diagnosis. Acute lymphoblastic leukemia (ALL) they were told, which at the time meant nothing more to them than the fact that their son was sick, and they were in for the fight of their lives.
Thankfully, Dr. Gary Kupfer, Professor of Pediatrics (Hematology/Oncology) and of Pathology, and Section Chief of Pediatric Hematology/Oncology, was on call that night, and met with Henry and his parents. Henry spent 10 days in the hospital, most of which was focused on getting him healthy and strong enough for treatment.
“During Henry’s time in the hospital it was about his care and getting him ready for treatment, but also about educating us on what this all meant. We didn’t feel lost once we were sent home, which was so important,” said Jenna. “They made sure to fully educate us on what symptoms to watch out for, and how to care for him. Henry was too young to tell us exactly what he was feeling, so we had to be vigilant, and they gave us the tools to do that.”
ALL is a fast-growing cancer of lymphocyte-forming cells called lymphoblasts. Around 80 percent of children are diagnosed with pre B-cell ALL as opposed to T-cell ALL, and the “pre-B” form of ALL is the type Henry was diagnosed with. Henry’s presenting age, white blood cell count, and leukemia subtype, enabled his eligibility for a clinical trial through the Children’s Oncology Group (COG).
The COG enables members of the Yale Pediatric Hematology and Oncology Program to work cooperatively with other academic health centers to conduct large-scale studies. Because childhood cancer is relatively rare, medical centers must work together to compile enough data. Yale’s participation also ensures access to the newest and best treatments available.
“There is a long history of clinical trials in pediatric oncology,” remarked Dr. Kupfer. “It is very different when compared to adult cancer care. Clinical trials first began with pediatric patients and in 1948 agents given to pediatric patients became the first drugs to induce remission in children with ALL. We recognize the population is small, and the importance of collaborating with other institutions.”
Henry had a central line and port put in for easier blood draw and to avoid any damage to his surrounding tissue during chemotherapy. Henry’s parents were taught how to handle the port to avoid infection, and Henry received oral chemotherapy at home every day, and intravenously through his central line at the hospital periodically for 40 months.
“It was very stressful to have to make the decision to put Henry on a clinical trial,” said Brendan. “When you hear the term childhood cancer you think you have an idea of what you are in for, but we really had no idea. Living close to NYC and Boston, we met with other doctors, but realized that Smilow was a special place. We were confident that our son was not only getting the best possible medical care, but also the best comprehensive care that included us as a family.”
Henry responded very well to the treatment protocol, which was developed to minimize long-term side effects using modified regimens without sacrificing cure. Henry’s parents felt comfortable that a clinical trial was the right thing for their son, not only because of his type of cancer, but also because by participating in a trial some good would come from Henry’s journey and he would have an impact on the future.
Jenna and Brendan commented that when your child has cancer it is an incredible stress on every aspect of life. Henry was going through the treatments, but they took on the mental burden as if they themselves had cancer. Henry has a twin sister and two older sisters that were in 2nd and 5th grade when he was diagnosed. The Pediatric Hematology and Oncology team partners with psychologists, psychiatrists, social workers, and child life specialists who offer an array of psychosocial services to children receiving cancer care, along with their families. They talked with Henry’s older sisters and explained things in a way they could understand, and answered their questions.
Dr. Kupfer explained that a large part of his role is to guide the family through all of the difficult decisions and treatments. The bond formed goes beyond the typical doctor-patient relationship that he learned about in medical school. “You are caring for, and hopefully curing their child of a life-threatening illness, and you cannot help but become connected, and this is a very special family. They rose to the challenge that was put in front of them, despite the normal fears and anxieties that any parent would have.”
Now six years old, Henry likes to share his story with others and has even spent time in the classroom with Yale medical students. For him, this has been life up until now. Henry went to school as much as possible, which is always a high priority of Dr. Kupfer’s for his patients. His parents commented that although he does not fully comprehend what he went through right now, some day he will and the courage and strength he showed at such a young age will be fuel for him.
“We are still healing as a family a year after his last treatment. It is a process and will always be a part of our lives. The effect is widespread and every hug means something different, every puzzle on the floor, every moment spent with my children is precious,” said Brendan.
Jenna commented, “It is a part of who Henry is and who he will become. We talk about it as much as he wants, without dwelling on it. We can’t help but think how none of this would have been possible without Dr. Kupfer and his team. You don’t get the level of care we received just anywhere. It was truly amazing and everyone knew Henry as a little boy, not as a cancer patient. They carried us through the darkest time, and for that we are forever grateful.”
Submitted by Emily Montemerlo on June 04, 2018