Sunday mornings at the Porchia household are times for family bonding. Dad Enrico loves to cook and leads their four kids in preparing breakfast while they share stories from the past week. Seven-year-old Alyssa has her own role in this ritual.
“She makes the buttermilk pancakes,” says Enrico. “From scratch,” he adds with pride. He says that even though he taught her to make them, she now does a better job and that the flapjacks just don’t taste as good if anyone else wields the whisk.
These Sunday mornings, complete with cartoons and coffee, give the family a much-needed chance to recharge.
Alyssa and her 3-year-old sister, Giuliana, were born with beta thalassemia, a disease that decreases production of hemoglobin, an important protein in red blood cells, and also causes severe anemia, a shortage of red cells. This leaves the girls tired and vulnerable to life-threatening complications. It requires monthly blood transfusions that can take between two and four hours — an eternity for a kid.
Alyssa has already endured numerous hospitalizations, including one life-threatening episode. The Porchias are proud of her courage.
“It is amazing to watch Alyssa teach Giuliana how to be brave,” says Jennifer, the girls’ mom. When they come to the Alex Scott Day Hospital for transfusions, the big sister always starts her transfusion first so that her little sister knows it will be OK.
The girls’ disease is closely managed by CHOP’s Thalassemia Program in the Division of Hematology, while their monthly blood transfusions take place in the Day Hospital. Between the transfusions and the ongoing clinical care they need, the Porchia family’s life revolves around CHOP.
“We live nearby and couldn’t even consider moving away,” says Jennifer. It goes beyond convenience; when complications occur, quick access to care can be lifesaving.
“The nurses are part of our family at this point,” says Jennifer. The staff knows that Alyssa is calm and quiet and loves to draw during her treatment while Giuliana, “a spitfire who has a personality and a half,” according to her mom, may need more entertainment and attention.
Often the girls end up side by side in the same big blue recliner, flanked by their IV poles as they laugh along with “Doc McStuffins,” their favorite cartoon.
Together, the Oncology Outpatient Clinic and the Day Hospital currently treat as many as 90 patients a day.
"Most are here for blood transfusions or chemotherapy,” says Mary Anne Kent, MHA, RN, the nurse manager. “Currently, we’re a little space-challenged.”
Kent eagerly anticipates the additional square feet that will come when the Day Hospital moves to the Buerger Center in 2015. The new Alex Scott Day Hospital will have floor-to-ceiling windows that wrap around the room, providing a view of the plaza gardens below. It will also have two playrooms — one for younger kids like Alyssa and Giuliana, and a teen room that they’ll appreciate as they grow.
For now, though, in spite of their health challenges, the girls enjoy just being kids, especially when they are making pancakes with their family or taking in some cartoons.
— Joy Manning