Another Night, Another Moffitt Meal
Picking up on Monday, February 29th 8:20 a.m. Mom and I arrived at Moffitt. Dad had trouble getting and staying asleep due to his feet bothering him from the radiation treatment in January. Hunter, Dad’s Sunday night nurse, had given Dad pain medication....
Eat Mor Chikin
Friday evening, February 26 Since Dad was admitted very early Thursday morning, Dad’s oxygen saturation has been continuously monitored with a pulse oximeter on his fingertip. On Friday evening, his saturation level dropped enough to warrant oxygen...
Dad’s Many Ducks
Upon entry into Dad’s room, each visitor freshly dresses in a yellow isolation gown, a yellow duck mask, and a pair of bright blue gloves. It is as if each visitor has come to Dad’s costume party wearing the same duck costume. 8:00 a.m. Mom and I...
No More Fun and Games
Yesterday, after Dad got home from Moffitt, Mom called me at 4:30 p.m. to say that Dad had a fever, 100.4, and was experiencing some chills. Dad spoke to the Moffitt nurse via phone. The nurse told Dad to take Benadryl since she believed his fever was a reaction to...
Flush & Tranfuse
This past week has been mostly filled with trips to Moffitt for Dad to get his central line catheter flushed daily and to receive blood support. Saturday, February 20: Dad had to go to the main campus of the Moffitt Cancer Center since the Moffitt Cancer Center at...
Up and Then Down
At 8:00 a.m., Dad had his blood counts checked to determine whether or not he needed another platelet transfusion to get his platelet count above 50 (50,000/mcL of blood). 50 is required for the medical procedure to place Dad’s new central line catheter....
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?
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