Emily's Story

We are deeply saddened that our dear Emily passed away on 1/3/2010 just after 4 am. Our family enjoyed a gorgeous day at Discovery Cove in Orlando on 1/2/10 where Emily swam with the dolphins. She wore a wet suit and enjoyed a truly magical day swimming in warm pools in a very tranquil setting. We laughed, loved, swam and played together as a family.

Emily's condition worsened late that evening after settling into bed. Our family was all together as Emily took her last breathes in her fathers arms. As sad as it sounds, it was her time to go home to the Lord after her long fearless battle. Our only regret is that Emily was not able to see all of her family, friends and supporters that she so loved and cherished so much.

History of her struggle

On 7/3/09 Emily was admitted to U of M's C.S. Mott hospital in Ann Arbor for what was thought to be a bad case of mononucleosis. Her lymph nodes in neck were holding approximately 12 lbs. of extra weight. Doctors did a neck biopsy  she was diagnosed with stage 3 Diffuse B-Large Cell Non-Hodgkin's Lymphoma. This condition is most common in adults and not children. Blood work was also sent to Children's Hospital in Cincinnati that revealed another very rare disease known as Hemophagocytic Lymphohistiocytosis (HLH), where certain phagocytic cells are attacking and destroying her good blood cells and organs. All of these conditions seem to have been triggered by the Epstein Barr Virus which had run rampant through her body. More testing was done to understand the possible causes of these conditions and subsequently led to a disease called Primary Cellular Immune  Deficiency. This type of Immune Deficiency is a rare disorder and Emily's case is still unclassifiable.

After 3 months of unsuccessful treatment at U of M. Emily was moved to Cincinnati Children's Hospital, where they specialize in HLH,  Immune System disorders and this specific type of  Bone Marrow transplantation.

Emily fought hard but her disease was resistant and despite our best efforts and the efforts of the worlds best doctors the disease took our daughter on January 3rd, 2010.


Emily's Primary Diagnosis:

Diffuse Large B-Cell Non-Hodgkin's Lymphoma Stage 4
HLH - Hemophagocytic Lymphohistiocytosis
Unclassified Rare - Primary Cellular Immune Deficiency
Epstein Barr Virus Positive
XLP Type Disease (X-Linked Lymphoproliferative Syndrome)
CNS Proliferation

Secondary Complications:

BK Virus
Gram Negative Rod Infection


Chemotherapy Regime
HLH 2004
Chemotherapy Lumbar Puncture
Radiation Immune Therapy Zevalin
Pre  BMT (Bone Marrow) Treatments