‘We’re going to Boston’: Why Aydan’s family temporarily relocated for craniopharyngioma care

One evening in October 2022, 2-year-old Aydan Arguello arrived at Boston Children’s Hospital. It wasn’t a routine visit, but instead the final stop in an urgent journey from his home in South Florida. Months earlier, the toddler had been diagnosed and treated for a large brain tumor — but it was a related concern that led his parents, Janeisy and Bergman, to make the 1,500-mile flight that fall day.

When the family entered Boston Children’s, they were met by a team of seven staff members, ready to prep Aydan for a minimally invasive surgical procedure that would relieve pressure on his brain.

“They were all waiting just for us,” remembers Janeisy. “I almost fell to my knees with relief. It was like something out of a movie.”

Questions, answers, and more questions

Earlier that year, Aydan had experienced extreme, insatiable thirst — a problem his doctors in Florida diagnosed as diabetes insipidus with no clear cause. But it wasn’t until Bergman and Janeisy searched online that they learned this condition can often be triggered by a tumor in the pituitary gland.

Janeisy, who is trained as a nurse, pushed for an MRI scan. The result: a craniopharyngioma, a type of childhood brain tumor that grows in the pituitary gland. Although craniopharyngiomas aren’t cancerous, they can affect hormone function and cause vision loss. As these tumors grow, they can also put pressure on the brain, leading to a buildup of fluid in the brain called hydrocephalus. Aydan’s tumor was already the size of a mandarin orange.

A neurosurgeon in Miami drained the cystic portion of the tumor. Aydan was also prescribed three medications to replace the hormones affected by the tumor.  However, the tumor was still there and the Arguellos knew he needed a more sustainable and definitive approach.

Finding the right surgeon for a craniopharyngioma

Many pediatric cancer centers often recommend starting with radiation or other nonsurgical approaches for craniopharyngiomas. However, after much research, deliberation, and consultation with the nation’s leading pediatric neurosurgeons and oncologists, the couple was hesitant to take that route.

When the Arguellos consulted with Dr. Lissa Baird, co-director of the Brain Tumor Center at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center, they were confident they had found the ideal fit for Aydan’s specific needs. Dr. Baird’s approach was backed by current evidence-based research, and she provided data and studies to support her recommendations.

“She took a logical approach that we really appreciated, and we were comforted by the number of similar cases she had previously treated,” says Bergman. “As soon as the call ended, my wife and I looked at each other and said, ‘We’re going to Boston.’”

New challenges — and a last-minute flight

In July 2022, Dr. Baird successfully removed Aydan’s tumor and he was able to return to Miami by the end of August. But Aydan was only home a few months when he developed hydrocephalus from the scar tissue that had formed after surgery — a possible consequence of the healing process.

While he struggled with the resulting headaches and nausea, his parents struggled to get him an appointment locally. When they learned that Dr. Baird could relieve his hydrocephalus endoscopically — which they felt was preferable to and more advanced than the approach his local physicians were suggesting — they knew they needed to return to Boston immediately.

With Aydan in increasing pain, time was of the essence. With the support of their families, the Arguellos spent their savings to hire a private plane to bring him back to Boston.

Moving for optimal care

As they had hoped, the procedure to treat Aydan’s hydrocephalus was relatively routine. But Dr. Baird warned them that the problem could recur.

“That,” says Bergman, “is when we decided we needed to move here while Aydan needed closer monitoring.”

He, Janeisy, Aydan, and their older son, Jordan, have called Massachusetts home for the past year and a half; they’ll be returning to Florida at the end of the summer. Aydan did experience another recurrence of hydrocephalus in November 2022 but has been stable since then.

His parents are grateful for his entire care team, including Dr. Baird, pediatric nurse practitioner Jessica Bryk, endocrinologist Dr. Joseph Wolfsdorf, and senior program coordinator Kelsey Largen.

“Everyone at Boston Children’s is so understanding and collaborative — they think about kids and parents first,” says Janeisy. “We can’t imagine Aydan getting care anywhere else.” 

One day at a time

Now 4, Aydan is sassy, confident, and funny. He can recite the list of daily medications he takes and dreams of becoming a doctor or nurse when he grows up. And he’s helping other kids with craniopharyngiomas: The tissue Dr. Baird removed is now part of the hospital’s “bio bank” and will help researchers learn more about these types of tumors. Aydan undergoes regular follow-up MRI scans and his parents remain cautiously optimistic about his future.

“We know we’re not even close to the finish line, but we take things one day at a time,” says Janeisy. “No matter what, we’ve found another kind of family in his care team.”

Learn more about the Brain Tumor Center.