Yesterday we spent the morning at Primary Children’s getting more labs. We checked her IGG levels, Calcium, and did a full panel on the liver. There are a few questions I had on some things that are requiring a liver check. We should find out today if we need IVIG this week or not. They want to push her to a 12 week schedule instead of every 8 weeks. We found out that she is still on IVIG
My name is Misty Fowler. I am a wife of 9 years and a mother to a 6 year old with Ganglioneuroblastoma Cancer and ROHHAD Syndrome. I work for a sport clothing apparel company. I currently work to learn more about my daughter's rare diseases and take pride in nurturing my family.