By WP BrandStudio
When Isabella Spadarella Christensen was nine years old, she started craving an abnormal amount of water. She needed it so badly she’d wake up four or five time a night, drinking bottles at a time, and it always had to be ice cold.
Knowing something was off, her mother, Bernadette, took her to a urologist to see if there was an issue with her kidneys. But the urologist suggested they visit an endocrinologist, Dr. Laura Bachrach, at Stanford Children’s Health in Palo Alto, Ca. The endocrinologist thought the root of Isabella’s issue may have been diabetes insipidus, a rare disorder that affects the body’s ability to metabolize salt or handle fluids. The doctor recommended an MRI to examine the pituitary stalk at the base of Isabella’s brain, which controls the hormones related to diabetes insipidus.
At this stage, Bernadette was still relatively calm. She was no stranger to doctor’s visits, since Isabella has Down Syndrome and the Christensen family was always ready for whatever support she needed, though Isabella’s vitality and bubbly demeanor made it pretty easy to get through most things.
“She’s very spirited and full of energy, and strong-willed. All good things when you are facing a difficult time,” Bernadette said.
Still, the Christensens weren’t prepared for what came next: The MRI found a tumor in Isabella’s pituitary stalk. That discovery kick-started a years-long ordeal with a range of specialists at Stanford Children’s Health. They worked together to treat Isabella’s tumor, while helping her navigate a complex health process and ensuring that, no matter what treatment she received, she’d be comfortable—and wouldn’t lose her spark.
Cracking an intricate case
Dr. Sonia Partap, pediatric neurologist and neuro-oncologist at Stanford Children’s Health, was the quarterback of Isabella’s anti-tumor team. She took the lead not only in getting a diagnosis, but also pulling together colleagues from various other disciplines to collaborate—an approach known as multidisciplinary care, which is at the heart of Stanford Children’s Health’s care strategy and was essential to helping Isabella heal. The coordination was formalized through what’s known as the brain tumor board. During the weekly calls, dozens of care providers came together to discuss patient cases, including Isabella’s.
“She was really unique. I’ve taken care of a lot of patients, and very few have so many specialties working altogether all at once on a case,” Partap said.
One specialist who was a key voice on the board meetings was Dr. Gerald Grant, chief of pediatric neurosurgery at Stanford Children’s Health. To determine what kind of tumor was in Isabella’s brain, he and his team conducted a minimally invasive biopsy of the pituitary stalk, using a procedure that enters through the eyebrow to collect a tissue sample. The test showed inflammation, but not much else, and there was no improvement in Isabella’s condition. Seeking more information, Grant and his specialized team of skull base surgeons suggested another minimally invasive biopsy procedure that would go through Isabella’s nose. But before scheduling it, they consulted with the rest of her care team to see if it would be a good choice.
“The brain tumor board is an important avenue to get everyone’s perspective—like Dr. Hiniker and Dr. Partap, myself, and others—on how to contribute to get the best possible outcome for people like Isabella,” Grant said. “We had that multidisciplinary communication, [which helped us decide], ‘Okay, yeah, let’s do this.’”
The second biopsy provided more clarity: Isabella had a rare type of brain cancer called a germinoma. That information allowed for the formulation of a treatment plan: the standard approach would be four cycles of chemotherapy and then daily doses of radiation over the course of four or five weeks, said Dr. Susan Hiniker, pediatric radiation oncologist at Stanford Children’s Health. That would be a rough course of treatment for anyone, but especially difficult for Isabella, who was so young and whose Down Syndrome sometimes made it harder for her to grasp what was going on during treatment.
After her first round of chemotherapy, it became abundantly clear Isabella’s treatment would not follow the typical path. She resisted insertion of the port into her chest, which was necessary in order to inject medicine. But nobody could figure out why, and Isabella couldn’t tell them. Eventually, her mother figured out she was especially bothered by the sticky covering that was put over the port when it was opened. Once Bernadette was able to talk Isabella through the process of having the sticker put on her and to console on other potentially over-stimulating aspects of her care, things were able to move forward.
A tough path to healing
During chemotherapy, Isabella suffered many complications, including infections that got past her immune system—already weakened by her Down Syndrome and her history of kidney failure, according to Partap—and at least one stroke. For Partap and her colleagues, it was clear that Isabella—facing a range of layered issues—benefited from the type of highly individualized care that Stanford Children’s Health is known for.
“Isabella is a very special person,” Partap said. “Standard regimens of treatments could not be implemented for her safety and long-term benefit.”
Even with a personalized care plan, however, Isabella endured a rough road to recovery. Right after her third round of chemotherapy, she experienced bacterial tracheitis, a potentially life-threatening infection that affected her ability to breathe. Then, her port became clogged and she had new leg weakness. It seemed like there was no end in sight—until one day, when Isabella’s doctors performed an MRI, and they noticed that her tumor had dissolved. The repeated rounds of chemotherapy had been effective.
This was a relief for her treatment team, who were already concerned about a fourth round of chemotherapy damaging Isabella’s already fragile health. Partap, Hiniker and Grant ultimately decided to forego the final round of chemo and get Isabella started on radiation sooner than they’d planned. And with input from Dr. Partap, as well as Isabella’s surgeons, radiation therapists and nurses, Hiniker and her team decided to treat Isabella with a slightly lower dose of radiation than would typically be used because of the Down Syndrome and the previous complications she’d experienced.
Knowing Isabella’s specific needs, the team did their best to make radiation as easy as possible for her. Before starting the treatments, they arranged casual visits to the radiation department, which was instrumental in helping Isabella get comfortable with the place and people. She would need to be very still for her weekly treatments, which meant using a mask to secure her head on a table. The team let her decide how she wanted the mask decorated; she chose a unicorn theme.
“We also made her two masks, so she could take one home with her and practice,” Hiniker said. “Her family is amazing and wanted to do whatever they could to help her be comfortable.”
As time went on, Isabella became more and more comfortable with the process, and very quickly charmed the staff with her spunky personality. From there on, treatment went off without a hitch.
“I could never have predicted how smoothly it went,” said Bernadette. “The team was so great.”
Isabella’s bright future
When Partap thinks back on her experience with Isabella, what she remembers most are the immense benefits of working as a large, multidisciplinary team, and the positive impact that had for Isabella, her family and everyone involved.
“It was really a team effort,” Partap said. “Without all the specialists at Stanford Children’s Health, it would’ve been impossible to get her through. We have such a wonderful, cohesive, communicative group of colleagues, and everyone was rooting for Isabella and wanting her to get better.”
Today, Isabella is 13 and tumor-free. On a recent video call, she bounded into the frame to show off her hair and makeup and performed a quick dance she had learned on social media. She talked animatedly about practicing medicine on a toy she received during treatment, named Chemo Duck.
Bernadette says Isabella is excited about learning to drive and going to college one day. For now, she continues to receive outpatient care at Stanford Children’s. Her case, and her personality, will not soon be forgotten by those who worked with her through her treatment.
“I’m a strong kid,” Isabella said.
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