Matt was a 23-year-old vibrant, artistic, fun-loving, music-making, soccer-playing man who, unbeknownst to him, had an immune system disorder that made him unable to fight off the Epstein-Barr Virus (EBV). EBV is a common virus to which 95% of adults have been exposed. Most children who are exposed to EBV develop symptoms akin to a cold, while exposure in adolescents and young adults may develop into mononucleosis or “mono.” Then there was Matt. Because of his immune system disorder – and the fact there is no vaccine for EBV – when Matt was exposed to EBV in his early 20s, he first developed a very bad case of mono and then a very rare case of EBV-induced Hemophagocytic Lymphiocytosis, or EBV-HLH for short. Only one-in-one million persons are diagnosed with EBV-HLH each year. Although Matt truly was one-in-a-million to us, in 2008, he was the one-in-a-million that developed EBV-HLH.
Trying to find a plain English description of EBV-HLH is difficult. We’re not doctors, so most explanations are hard for us to understand, even though we lived it with Matt. The best one we have found is from the Cincinnati Children’s Hospital, which is a leader in HLH treatment for children:
Hemophagocytic lymphohistiocytosis (HLH) is a rare and life-threatening immune disorder, involving severe, uncontrolled inflammation in the body. In patients with HLH, the immune system does not work as it should. This is due to rapid and uncontrolled growth of the body’s defense cells called lymphocytes and macrophages. Normally, these cells keep our bodies well by destroying infected or damaged cells. However, in patients with HLH, these cells not only destroy the damaged cells, but they do not “shut off” as they should and go on to destroy other cells such as red blood cells, platelets, and neutrophils within the body. Macrophages and lymphocytes can also build up on organs including the skin, spleen, and liver. This causes fevers and can damage the liver and spleen.
(Excerpted from Your Guide to HLH, Hemophagocytic Lymphiocytosis, Cincinnati Chldren’s, HLH Center of Excellence).
EBV-HLH is a rare disease. Many health care providers, even today, are unfamiliar with it. Thus, it’s no surprise that in early 2008 Matt’s doctors were confounded by his symptoms. They could not figure out what was causing his fevers, enlarged spleen, and low blood cell counts. It was not until he was transferred to USC’s University Hospital, and after he went into respiratory arrest, that one of his ICU doctors, who had just presented a talk on the disease, made the diagnosis and began Matt’s treatment. Even so, Matt’s EBV-HLH waxed and waned; he would get better during treatment, but relapse once it was completed. Over time, while battling EBV-HLH, Matt also contracted non-Hodgkin’s NK T-cell lymphoma, a form of blood cancer. So, in addition to his treatments for EBV-HLH, Matt also began treatments for his cancer. Throughout all of this, Matt kept his sprits high by listening to his favorite music, and through visits from family, friends, and musicians from The 88, The Dandy Warhols, and Jack’s Mannequin. Matt eventually completed nine rounds of chemotherapy and a bone marrow transplant at the City of Hope in late 2008. Initially, it appeared that the bone marrow transplant was successful, but in mid-2009 Matt’s EBV-HLH and NK T-Cell lymphoma returned. This time, however, the cancer had traveled to his brain, requiring several rounds of radiation. By this time, Matt’s poor body – although not his spirit – was severely weakened. It simply could no longer withstand the onslaught of both EBV-HLH and lymphoma. On October 3, 2009, surrounded by his entire family, Matt passed away. We miss him.
- Matt Cwiertny
Matthew Aaron Cwiertny
Birthday: February 14th
Nicknames: Zwitnee, Matty, C-Dub
Schools Attended: St. Bonaventure, Mater Dei High School, UC Santa Barbara, UC Irvine
Major: Art Studio Minor: Art History
Favorite Musical Artists: Jack’s Mannequin, The 88, Beck, Moby, Keane, The Dandy Warhols, Coldplay, Jack Johnson, The Bravery, Avril Lavigne and too many more to mention.
Favorite Sports Teams: AS Roma, LA Galaxy, Anaheim Angels
Favorite Restaurants/Food: The Hat (Pastrami), John’s Philly Grille (Cheesesteaks), BJ's (Pizookies), CPK (BBQ Chicken Pizza)
Favorite Quote: “When you’re young, you spend all your time wishing you were older. When you’re old, you spend all your time wishing you were young.” -- Señora Pankenier
Anyone who knew Matt knew that he was a very creative person. In his later years, Matt’s creativity found a perfect outlet in still photography. Wherever he went, it was almost certain that he would have his camera with him. Here is a small sampling of the photos Matt took on his journeys.