Online Staff Report
LOVES PARK, Ill. — The Hope and Anchor English Pub, 5040 N. Second St., Loves Park, Ill., will host a benefit Saturday, April 6, for local 5-year-old James Strong, who has been diagnosed with Langerhans Cell Histiocytosis (LCH) and Diabetes Insipidus.
Titled “Songs to Keep James Strong,” the event will feature seven bands and run from noon until 1 a.m. Musical lineup includes Jim Grass, noon-12:45 p.m.; Harlan Jefferson, 1-2 p.m.; Chuck Grass & Josh Parks, 2:30-3:30 p.m.; The Stragglers, 4-5:30 p.m.; Desolation Row, 6-7:30 p.m.; Tripping Tarzan, 8-10 p.m.; and Gotham City Band, 10:30 p.m.-1 a.m.
In addition to proceeds made at the event, donations can be made to the “James Strong account” at any BMO Harris Bank.
Following is a letter written Feb. 10 by James’ parents, Cliff and June Strong:
James is 5 years old. When he was a baby, he had a long-term ear infection. Ear tubes were placed in with no results. In July 2010, James underwent many tests (including an MRI, CAT-scan, endoscopy and biopsy) at UW Children’s hospital in Madison. They found a tumor behind his right ear, and he was diagnosed with Langerhans Cell Histiocytosis (LCH).
LCH is a rare white blood cell disorder that is believed to occur in 1 in 200,000 children. It causes an overabundance of dendritic cells that causes healthy immune-fighting cells to overreact and attack cells in bones and skin and major organs. It can only be fought with the use of the same treatments used in Leukemia patients.
Within the first week James was diagnosed with LCH, he had surgery for his IV tube called Hickman line and started aggressive chemotherapy (vinblastine with steroids). James went into remission after 13 months of treatment in August 2011. He enjoyed a whole school year in pre-K in which he learned how to interact with other children and life outside of the home.
However, in June 2012, new LCH tumors were found in a routine MRI scan. He was also diagnosed with another rare disease called Diabetes Insipidus, which affects the balance of water in the body. He needs a life-long supplement for it.
James underwent a port surgery on his left chest in July and is now having three days of chemotherapy (vincristine and cytarabine) every three weeks. He is still able to go to school some of the time. However, we are unsure how long he will be on the treatment.
With only a few charities helping us since his disease is so uncommon, we ask upon our friends and community to help us to continue to give James the best care and treatments possible.
Posted April 3, 2013