This section offers the latest information on Arielle and her health as it pertains to PHACE Syndrome. If you want to read our journey like a "story", we suggest starting with the last date first and going in chronological order. The most recent news is first. If you prefer a condensed "highlights" version, visit the TIMELINE section.
August 15, 2009
Today Arielle celebrated her 18-month-old birthday. The best part about to the day was how entirely "normal" it was. No appointments with doctors or other specialists. No random bouts of screaming, presumably from hemangioma-related pain. No medicines to measure and ensure are ingested. No unpleasant side effects from medicine. Not even a single question, stare or wince from a stranger about the marks on her head and face.
Those marks are a mere shadow of what they were at their peak last summer. Going on propranolol, a medicine that until now has been primarily used to regulate blood pressure, was nothing short of her miracle in a bottle. Her results were astounding, as it immediately stopped the progression and prompted the involution of her most prominent sign of PHACE Syndrome. In early May, Arielle was a featured guest patient at the Texas Dermatology Society's annual conference. Her dermatologist spoke to more than 100 dermatologists from across the country about her experience on propranolol, a drug doctors hope one day become the new gold standard for treating severe infantile hemangiomas.
We couldn't be more proud of each and every one of Arielle's accomplishments. She continues to meet all her developmental milestones, though we'd be just as proud if that weren't the case, as it's her determination we find so impressive. She is walking, even running when given enough incentive – like Mommy going to another room. She has favorite words, toys and gestures. All the sign language practice has paid off, with Arielle regularly indicating "hungry," "more," "all done," "pick me up," and her all-time favorite, "outside." She completed the Shrimp (age group) swim class at the YMCA, and the weekend just doesn't feel like a weekend without a trip to the pool. She loves saying her favorite words, like "ball" and "cheese," and imitating the sounds of her favorite animals, "woof," "moo" and her very favorite, "roar."
That roar is the exclamation point of our experience. Some of you may recall Arielle's name means "lion of God" in Hebrew. The strength, courage and downright feistiness she demonstrates on a daily basis keeps us, her parents, going – and smiling more than we ever thought possible along the way. As beneficial as sharing our journey has been for us, we feel the time has come for it to be on Arielle's terms. For that reason, this will be the last public post on how she is progressing. We will leave the site up for a while, as it seems to be particularly helpful to other families weighing the use of propranolol, but eventually we will take it down to respect her privacy. We will respond on a personal basis to inquiries or individuals wanting updates.
Rest assured, there is a long road and journey ahead. The main pathway connecting the two hemispheres of Arielle's brain didn't form. Research indicates that while some kids are able to more or less keep pace with their peers until adolescence, a divide commonly happens around that time, and it's apt to be a vulnerable and trying time for Arielle.
Future fears aside, we are light years ahead of where we were at this time last year, and a universe away from the terrifying place we were at when Arielle was born. We have many people and a benevolent higher power to thank for that. So thank you. Thank you for opening your heart to our precious baby, now little girl. Thank you for sharing this experience with us. Thank you for caring. Thank you for praying. Thank the good Lord above for listening. And please continue to keep it up.