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
Psoriasis
Mucositis
Gram Negative Rod Infection
Cardiomyopathy
Treatment:
Chemotherapy Regime
RICE
HLH 2004
Rotuximaub
IVIG
Steroids
Chemotherapy Lumbar Puncture
Radiation Immune Therapy Zevalin
Campath
Pre BMT (Bone Marrow) Treatments
