DOVER, Del.- Every week Cheryl Vogl brings her 1-year-old son Silas from Dover to AI Dupont Children's Hospital in Wilmington for treatment of a little known disease.
Last July, Silas rolled over on the hard wood floors in his home and a bump the size of a goose egg formed on his head, then Vogl, took him to the doctor.
The pediatrician said it was nothing to worry about, but Vogl was still worried. Days later Vogl took her son to get it checked out again. This time, a CAT scan brought her bad news.
Silas was diagnosed with multisymptom Langerhans' cell histiocytosis, or LCH.
"I still didn't even know that much about it. I googled it and it's scary," said Vogl of LCH, which can behave like a cancer and is usually treated by children's cancer specialists.
Now, Silas is fighting his illness and receiving chemotherapy treatment for the next year. It is hoped that he will go into remission.
"He had a port placed in his chest, which is like a metal disc, that's where they access his blood for labs and chemotherapy," said Vogl. Silas looks and acts like a healthy baby. He climbed on his mother's lab while she explained that a tough part of the disease is not knowing what is going to happen next.
LCH comes with complications, like fevers and a weak immune system. It has changed Silas' life and Cheryl's.
"I've almost become OCD," she said. "That's the part that changes your life. You're afraid to take him anywhere. If someone coughs around you, you want to take a shower. That's hard."
Vogl continues to support Silas as he fights LCH. Doctors tell her Silas will continue to receive chemotherapy until December. Vogl said she hopes the side effects following the chemo will be minimal.
"Some kids when they start school age they have memory loss problems or behavior issues, because of the chemo," said Vogl.
Later this month Vogl will travel to New York City, where she will join other parents hoping to increase awareness of histiocytosis and its various forms.
"I want it to become known. If people don't know about it, they won't diagnose it, and kids wont get treated," Vogl said. "I am lucky that I had a good pediatrician that did follow through and did a CAT scan and that we live near AI Dupont, but other parents are not that lucky."
About one in 200,000 children have a form of histicytosis each year. Histiocytosis is a general name for a group of syndromes that involve an abnormal increase in the number of immune cells called histiocytes.
There are three major classes of histiocytoses:
- Langerhans cell histiocytosis, which is also called histiocytosis
- Malignant histiocytosis syndrome (now known as T-cell lymphoma)
- Non-Langerhans cell histiocytosis (also known as hemophagocytic syndrome)
- This disorder is treated with corticosteroids, which suppress immune function (including the dangerous cells)
