When their son, George, became extremely ill again, Catherine and Sam Baker were devastated.
Diagnosed with Langerhans cell histiocytosis (LCH) when he was 2 years old, George had battled the disorder successfully with chemotherapy and steroids throughout the past year. But when the rare disorder returned, a second round of chemo had begun and was proving even harder than the first. George wasn’t just ill — half his hair fell out and it was difficult for him to walk.
“We prepared for two years of that and honestly didn’t know how we’d cope,” said Catherine.
A few days later, though, everything changed for the better during a phone call with a close family friend. Catherine was explaining how she felt strongly that they needed to do something else to help George. She knew this couldn’t be it for her son and their family, but didn’t know where to start.
Minutes after they hung up, she received an email with a hyperlink to the Cincinnati Children's website. Her friend’s grandson had been treated here for an entirely different condition, but she wrote that “the hospital had been wonderful and this may be somewhere to start.”
Catherine opened the website and spent the next half hour reading everything she could.
“There was Dr. Kumar’s bio and a summary of his experience treating children with LCH, and how he and his team treated the disease differently to almost every other hospital in the world. It seemed too good to be true,” said Catherine.
“I then drafted an email directly to Dr. Kumar explaining our situation and asking if he could help us.”
A few hours later Catherine was shocked to receive an email from Ashish Kumar, MD, PhD, co-director of the Histiocytosis Center.
“I don’t think I even expected a reply; or at least certainly not a reply from Dr. Kumar himself,” said Catherine. “Over the next three days we corresponded back and forth. He answered all our questions thoroughly, clearly and with kindness.
“I remember thinking, this is going to be the man that will save my son.”
With the help of care manager Kristen Coleman, RN, handling the logistics to make the journey possible, the family quickly made the necessary plans to travel overseas to Cincinnati.
“I first emailed Dr. Kumar on a Friday. By Monday afternoon we were having a video call and on Wednesday morning we were flying to Cincinnati to meet with him and his team,” said Catherine.
Kumar felt it was imperative to see George as soon as possible and get him started on an alternative treatment. LCH is a rare, cancer-like condition in which a person’s body makes too many immature Langerhans cells. These can form tumors or damage tissue and organs. In George's case, it affected his bones, spleen and liver.
“His condition was getting worse with chemotherapy with his liver deteriorating rapidly,” said Kumar.
At this point, Catherine felt like her brain was shutting down rapidly. A lack of sleep, caring for a very sick 3-year-old and trying to retain a sense of normality for the rest of the family was taking its toll. She described it as operating on a “maternal adrenaline induced state.”
“But literally as soon as we found [Cincinnati Children's] everything changed,” she said.
“Kristen Coleman was in very regular contact with me arranging our visit, she put me in touch with various staff [members]. No one could have been more helpful. The compassion and kindness we were shown is indescribable.”
Once he became a patient, George soon began treatment with an oral drug (trametinib) therapy. Over the years Kumar and his team have seen a 100% success rate among current LCH patients using this drug.
“We were able to quickly bring things under control with our inhibitor therapy,” said Kumar. “Treatment that was not available to them in England.”
Within days, George was feeling better. Positive effects were immediate, said Catherine, but it took time to find out how much George had improved with the new treatment.
And now one year later, she describes her son as a “happy, energetic, mischievous, inquisitive 4-year-old,” who loves tennis, soccer, swimming and playing with his sisters. He is currently on the same treatment and doing well as the family splits time between upstate New York and Sevenoaks, England, located just 30 miles south of London.
“This is another example of parents taking the reins in their hands, reaching out to us directly, and the strengths of our setup that allowed us to help this child,” said Kumar.
George, though, still needs to have his liver monitored due to long-term effects of having LCH in his liver. He returns for yearly visits and thus far has exceeded expectations in recovering from his liver disease.
By controlling the LCH, Kumar and team hope it will give George’s liver a chance to recover and regenerate. Concerns about his liver function remain (and the possibility of a liver transplant one day), but for now the family is focused on the current positives and not the negative what-ifs.
“All three of our children know that Dr. Kumar saved George’s life. They are too young to fully understand that Dr. Kumar and his team also saved our entire family,” said Catherine. “Without him our lives would look very different today. It’s not possible for me to fully consider that because, very simply, it’s just too awful a thought.
“So instead I try and just think about how fortunate we are to have met him, how grateful we are to him and all his team for helping George, and for giving our family the chance to move forward with our lives together.”
(Published August 2021)
Geroge with his parents, Catherine and Sam, and older sisters Beatrice, 6, and Alice, 8.
George, pictured in hospital after his diagnosis in England.