As of February 11th Sarah is completely off of the steroids that she began at two and a half weeks old. Sarah's doctors have decided now that she is getting laser treatment once a month that the steroid use is no longer a necessity and the side effects are not worth keeping her on them.
After two weeks of being off the steroids we noticed the hemangiomas had started growing on the inside of her lip. We immediately took her to the hematologist Dr. Mogul. After talking with Dr. Mogul we decided it was time for another MRI because of the new growth on the lip we were concerned about the growth on the inside near her airway and behind her eye revealed on previous MRIs.
After getting the results of the MRI the good news is that there is no new growth anywhere but her mouth and since there is no obstruction with her eating or breathing chemotherapy is not required at this time.
Sarah is very happy to be off of the steroids,she is playing more during the day and interacting with us more. Plus she is now sleeping through the night. She has also been working on her first tooth, expected to arrive any day.
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Dear Sarah and family,
Greetings from another family of a baby with hemangiomas living in Charlotte. My son, Ethan, was diagnosed with subglottic hemangiomas (in the airway)in December of 06. He was treated with high dosage steroids (we had a porkchop baby too!). He was then trached at 5 mos-the hemangiomas occluded 95% of his airway. We're hoping now (he's 16 mos) old that the hemangiomas are gone or at least small enough to get the trach removed at the end of this month. I'm so excited to hear that you're seeing Dr. Waner for Sarah's treatment. He's the best-I know you know that. You can read about Ethan's journey at www.caringbridge.org/visit/ethanshobert. I'll be reading more about your journey, but I was so excited to hear about you that I had to leave you a note right away.
Elaine Shobert
eshobes@aol.com
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