Allyson, Maddy, and Caiya are your typical tween best friends — sharing inside jokes and constantly chatting about everything and anything. “They’re always on FaceTime talking and laughing,” shares Kim, Maddy’s mom. “They just love each other.” You’d never guess that these three girls didn’t meet at recess, but rather through Dr. Amit Grover, director of Boston Children’s Pancreatic Disorders Program.
All three girls are living with pancreatitis, a condition in which the pancreas becomes inflamed, causing digestive enzymes to attack it. There are different causes of pancreatitis, and it can range from acute to chronic. Patients who live with chronic pancreatitis — like Allyson, Maddy, and Caiya — can have their lives turned upside down when a flare-up occurs. Chronic abdominal pain, difficulty using the bathroom or digesting foods, decreased energy, weight loss, and other symptoms are common in many kids with this condition. This means missed school days, painful flare-ups during their favorite hobbies, and emotional distress when trying to explain the pain to someone who might not understand.
Finding a community of people who understand this pain and have lived through similar experiences can be rare for kids with chronic illnesses — which means Caiya, Allyson, Maddy have a connection unlike any other. Each of their experiences with pancreatitis had very different beginnings, but they were united by Dr. Grover and their shared diagnosis.
Different roads that merge into one
Allyson’s journey began when she was 3 years old. After intense vomiting, an emergency room doctor in her home state of New Mexico ran thorough tests to check for underlying causes. “We were lucky this doctor knew to run the proper tests, because as soon as they did, the results came back positive for pancreatitis,” explains her mom, Kymberly. Through her own research, Kymberly knew that Allyson needed to be seen by the specialists in the Pancreatic Disorders Program. They relocated to Boston, and Allyson, now 10, has been seeing Dr. Grover ever since.
When Maddy, now age 9, was in daycare in her hometown in Connecticut, she came home with what her mom, Kim, thought was a stomach bug. When the symptoms continued to get worse after a few days, she was brought to her local hospital. A blood test showed elevated pancreatic enzyme levels; however, her local doctors believed that this was a just a fluke. Over the next few years, Maddy underwent multiple tests — but no answer was found.
Eventually, Kim requested a second opinion from the Division of Gastroenterology, Hepatology, and Nutrition. “The GI team was fantastic: They helped get Maddy’s records together and got us seen by Dr. Grover incredibly quick.” Within a month at Boston Children’s, Maddy was officially diagnosed with hereditary pancreatitis. “It was such a relief to have Dr. Grover immediately start helping her.”
Caiya’s journey began while she was being treated for leukemia. On Christmas morning in 2020, she collapsed and started vomiting. Luckily, her family lives in Massachusetts, so they went straight to Boston Children’s. “Within hours of us arriving, they tested her for pancreatitis, and it came back positive,” remembers Beth, her mom. Caiya’s pancreas was in bad shape, with noticeable pseudocysts, pockets of fluid that form near the pancreas, that needed to be drained. While she was hospitalized , her first introduction to Dr. Grover was one that brought a smile to both Caiya and her mom. “From the minute we met him, we all loved him — especially Caiya,” shares Beth.
Camp HOPE provided a silver lining
This past spring, after Dr. Grover shared that the National Pancreas Foundation (NPF) was putting together a summer camp called Camp HOPE, each family knew they wanted to get involved. Camp HOPE provides a medically safe camp experience for kids with all types of pancreatic disorders. The three families were connected through an NPF representative due to their proximity and the fact they were all being treated by Dr. Grover — and the rest is history.
After a few weeks of chatting online, the three moms realized Allyson, Caiya, and Maddy all had appointment on the same day As a fun surprise, Kim made matching “Team Grover” T-shirts for each of the girls.
The girls immediately bonded, and they all agreed that they would see each other again this summer when they attended Camp HOPE — and what a reunion it was! “The girls were able to play and just be kids together, it was such a great experience for them,” shares Kymberly. Although there are still challenging days for each of the girls, they know they can lean on each other and support each other through it all — and do it in their matching T-shirts.
Learn more about the Pancreatic Disorders Program
Related Posts :
Rylan’s story: A fixed and full tummy
Our sweet son Rylan cried all of the time as a baby. We were told by our local pediatrician in ...
Precision chemo-immunotherapy for pancreatic cancer?
Pancreatic cancer is highly lethal and in great need of better treatments. Only about 10 percent of patients remain alive five ...
Lifechanging surgery brings Ann-Raleigh relief from VUR — and some new ‘besties’
When Ann-Raleigh Murthy travels to Boston from her home in Louisiana, she has a list of “must-dos.” Among the highlights: ...
An off-the-shelf tamponade kit provides surgeons with ‘the luxury of time’ during a life-threatening emergency
It was a late Friday afternoon in April when the call came: A young boy was being transferred to Boston ...