One of the blogs I read regularly is about a boy named Elias. He was born May 1, 2008 and because of the Vacterl Network, they found us or we found them. Michael and Katharine are his parents, and Elias is their first child. Elias has been in the NICU since he was born. They have just found out that Elias does not have Vacterl association, but Fanconi's Anemia. They are devastated, and Michael called it a "crushing blow." I'm in tears right along with them. I remember Brody getting tested for that, and being so afraid of it. I cried when they told us it was negative for Fanconi's.
As Michael said on his blog, Fanconi's anemia is characterized by physical abnormalities, bone marrow failure, and increased risk of cancers. Progressive bone marrow failure typically presents in the first decade, usually around seven to eight years of age. There is also high instance of tumors of the head and neck, esophagus, and liver. People with Fanconi anemia often develop leukemia and other cancers.
Then there is Dante. Dante is Brody's age, 2, and has been battling neuroblastoma for 10 months. And his family just learned that the cancer is back, or spread, to his eye socket and leg. He started radiation immediately. We were hoping the scans would come back with good news. Not this.
Then I look at my Brody, and I wonder if there are any children anywhere who are healthy. I can't believe I didn't have my first surgery until I was 33. How naive I was. I get updates for 9 carepages and 6 caringbridge sites. Even with Brody's medical issues, how naive I was until this week.
I cannot bear these children being so ill.
I am so angry. I am so angry right now. I don't understand. I don't understand why some children are never sick and some are always sick. I don't see what purpose that serves or what good goes into the world from that.
If anyone is reading this, please follow the links above and post a message of support to those two famliies. They received the news that no parent can bear to receive this week and need every piece of support they can get.