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Being the Outlier

Dad’s battle against cutaneous T-cell lymphoma.

Fit for Transplant

As another step in the pre-transplant testing phase, Dad started his day with 20 vials of blood drawn.  The blood will be tested for additional organ functions and past exposure to diseases.  Dad’s white blood cell count was lower today at 1.74.  His hemoglobin...

He’s Not Loony

Feeling a bit nauseated first thing this morning, Dad started his day at 8:00am at the Moffit Cancer Center’s main campus with a psychological evaluation by Dr. Booth-Jones.  Dad claims he “passed.” Dad described several of the activities he had to...

Running the Gauntlet

Dad ran the gauntlet today.  Upon arrival at the Moffitt Cancer Center at International Plaza (MIP) this morning, the pharmacist informed Dad that she had spoken to Dr. Sokol, malignant hematology, about Dad’s current blood counts.  Dr. Sokol felt that they were...

Bone Marrow with Wings

Dad went back to the Moffit Cancer Center at International Plaza (MIP) today.  His day started with the traditional blood draw to check his counts.  Dad’s hemoglobin is slightly down from yesterday’s 8.4 to 7.7.  April, the PA at MIP, has scheduled Dad for...

New Year, New Treatment, and New Blanket

This afternoon Dad went to Moffitt Cancer Center at International Plaza (MIP) for his series of appointments.  MIP is much closer to their condo.  We prefer this location for its proximity when Mom is driving.  Prior to Dad’s cancer, Mom had essentially stopped...

Battle Cancer via a Google Pill and Wristband

For Christmas, one of the presents I gave to my children (aka Dad’s Grandson (13 years old) and Granddaughter (12 years old) in this blog) is Google Cardboard. It is a simple, fun and affordable way to experience virtual reality (VR) using a cardboard viewer and your...
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Who is Dad?

Presently, the risk of an American man developing cancer during his life is nearly 1 in 2.  In 2013, Dad was the 1 in 2 diagnosed with cancer (of any type) and 1 of 3,000 new cases  of cutaneous T-cell lymphoma (CTCL) in the U.S.  Dad was 1 in 450 CTCL cases which were diagnosed as Sézary syndrome.

Who is blogging?

The primary blogger journaling Dad’s roller coaster called “cancer” is his daughter, Jennifer.  Additional bloggers may include other family members.

Why this blog?

We are sharing Dad’s story so that we highlight the experiences of a real patient, a caregiver, and his family affected by cutaneous T-cell lymphoma (CTCL).  We want to raise awareness and share the results of the various treatments attempted for this uncommon disease.  Most importantly, we want to  give inspiration and hope to all families waging their personal wars against CTCL.

What is cutaneous T-cell lymphoma?

“Cutaneous T-cell lymphomas (CTCLs) constitute a group of non-Hodgkin lymphomas (NHLs) of the skin.  CTCLs are cancers of the T lymphocytes (a type of white blood cell) that mainly affect the skin but can also involve the blood, lymph nodes and/or internal organs in patients with advanced disease.  There are many types of CTCL. The two main subtypes are mycosis fungoides (MF) and Sézary syndrome (SS). Initial signs of MF include skin patches, plaques or tumor nodules. SS is a type of CTCL that affects both the skin and the blood.” — Leukemia & Lymphoma Society

What is Sézary syndrome?

“Sézary syndrome (SS) is a more aggressive, leukemic form of CTCL, with widespread skin effects, enlarged lymph nodes and the presence of significant numbers of malignant lymphocytes (called ‘Sézary cells’) in the blood. The disease is characterized by an extensive red rash, itchiness and sometimes loss (sloughing) of the exterior layers of the skin. These patients often have skin infections due to the extensively compromised skin.” — Cutaneous Lymphoma Foundation

Dad’s Cancer Team

Dr. Ernesto Ayala

Blood & Marrow Transplant

Dr. Frank Glass

Cutaneous Oncology

Dr. Michael Montejo

Radiation Oncology

Dr. Lubomir Sokol

Malignant Hematology

Be strong and courageous. Do not be afraid or terrified because of them, for the Lord your God goes with you; he will never leave you nor forsake you.

Deuteronomy 31:6