Archive for vascular anomalies
I’ve been there, too: What my baby’s tumor taught me as a NICU nurse
I had a toddler at home when I found out I was pregnant with my twins, Hannah and Sophie. Since I had already had a baby, I thought I knew what to expect during my pregnancy. I also work in the neonatal intensive care unit (NICU) at Boston Children’s Hospital, so I thought I was ... Read More
Advocating for herself: Drew takes lymphedema in stride
Five-year-old Drew Rossi has no problem explaining why she wears a daily compression garment. “I have lymphedema,” she tells anyone who asks about the compression sock on her left leg. “She took this diagnosis and ran with it,” says her father, Don. “She’s already a great advocate.” Don and his wife, Kerri, knew that something ... Read More
Targeting treatments for vascular anomalies, courtesy of cancer genetics
Vascular anomalies — overgrowths or malformations of the capillaries, veins, arteries, and/or lymphatic vessels — often confound physicians, especially in acute settings. They encompass a diverse group of conditions, all of them rare, and can affect multiple body systems. Many physicians have never encountered vascular anomalies and may be unaware of the risks they sometimes ... Read More
Answers for Isaac: A family’s journey to treat vascular anomalies
Early on, Jinah and her husband knew their son Isaac was battling something complex, but they couldn’t figure out what it was, even after seeing numerous specialists. Their search for answers spanned the globe and eventually brought them to the Vascular Anomalies Center at Boston Children’s Hospital. It was in Boston that they not only ... Read More
Another use for mTOR inhibitors: Preserving vanishing bones in Gorham-Stout syndrome
The mTOR pathway is fundamental to nearly every cell in the body. It drives processes related to cell growth, protein production and metabolism, influencing everything from neurocognition to tumor growth. Because of this broad role, indications for drugs targeting the mTOR pathway are also remarkably broad. Alexander Malloy, 14, is one of the first patients ... Read More