Our family will proudly represent Children’s Hospital of Wisconsin during Family Advocacy Day, June 19-20 in Washington, D.C. Children’s Hospital of Wisconsin is the reason our family of six is still together, and we are honored to be able to share our experiences with legislators on behalf of the hospital.
Family Advocacy Day brings nearly 30 families from the nation’s top children’s hospitals to Washington each summer. While there, families educate members of Congress and the media about the quality health care that all children and families need. We also address critical medical and health care concerns for children, specifically in our home states.
Our son was diagnosed with severe aplastic anemia
Antonio is the third of four Rieder children, and he was diagnosed with severe aplastic anemia in 2009 during his first month of kindergarten. After being treated in Madison, Wis., for several months, it became clear that Antonio would need a bone marrow transplant to survive. We turned to Children’s Hospital of Wisconsin in Milwaukee to help guide our path. We had already met with Dr. Margolis, who is one of the most respected experts in the field of aplastic anemia in children. He was accessible, knowledgeable and forthcoming, and he would ultimately lead the transplants that saved Antonio’s life.
Antonio had two transplants because his first one failed. Fortunately, it failed quickly and completely, so we were able to move ahead with a second. He received his new cells in the intensive care unit, which is a rather unique situation. Here is an excerpt I wrote on CaringBridge the day after the second transplant:
Antonio is very weak right now, so his physical therapy will be much more intense when we move back to HOT [Hematology, Oncology and Transplant Unit]. He sat in the chair for a couple of hours again today. But it is a huge effort for him to move off of the bed and back. His whole body is weak and shaky.
Antonio started G-CSF today [to stimulate production of white blood cells], which is to stimulate neutrophils. Even though we know he can’t make any yet, they like him to be on the medication the very first day of white cell production, and we don’t know exactly when that will be.
His blood pressure has been elevated for quite a while, and he has been requiring doses of his medication hydralazine quite frequently to bring it down. So today they decided to schedule it. I’m not sure whether they decided to give it every 6 hours or every 8.
We have let him watch TV pretty much all day today, because we know that this coming week will be lots of hard work with PT [physical therapy], school, and a more regular schedule. We decided that he should have a snow day just like everyone else.
It has been two and a half years since I wrote this. Antonio is catching up in school and his medical needs are relatively few, considering what has been done to his body. He will be an “All Star” at Family Advocacy Day, and two of his three sisters will be there to share the experience with him. We are looking forward to meeting families representing other hospitals and sharing our story with legislators.
– Staci Rieder, guest blogger