Being the outlier

Dad’s battle against cutaneous T-cell lymphoma.

Back to School

Dec 30, 2015

This morning we attended the Allogeneic Pre-Transplant Class at Moffitt. It was our first time in the transplant inpatient unit as the class was held in 4W (fourth floor of the Moffitt inpatient area, west wing). Transplant inpatients are located on the third and...

We Have a Tentative Transplant Date

Dec 29, 2015

The pre-transplant train continues to move along its tracks. We met with Denise, the transplant coordinator, this morning. She shared that Dad has a tentative transplant admission date of February 4th and a transplant date of February 9th. Denise is awaiting...

Pre-Transplant Testing Has Begun

Dec 28, 2015

Today was Dad’s first day of five pre-transplant testing days. The day started in the BMT (bone marrow transplant) clinic with a visit with Theresa, the social worker who was filling in for Penny, who is out of the office this week. Penny is the social worker...

My Favorite Things

Dec 25, 2015

This is Dad’s third Christmas with cutaneous T-cell lymphoma. Cancer’s presence in our family reminds me how important it is to spend time together as a family enjoying the treasured family traditions of the holidays…especially Christmas. Last...

Lighting Up the PET Scan

Dec 23, 2015

Yesterday, Dad met with Dr. Montejo, radiology oncology, to discuss and plan for his radiation treatment. As a part of that discussion, Dr. Montejo shared Dad’s latest PET (positron emission tomography) scan, which was taken November 24, 2015. Dr. Montejo...

Blood Transfusion #4

Dec 22, 2015

Dad is actively being treated for pancytopenia, a condition that involves a drop in the number of erythrocytes (red blood cells), leukocytes (white blood cells) and platelets in the bloodstream, because his bone marrow took a heavy beating during his last cycle of...

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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

Deuteronomy 31:6