April Fool’s
Today is Dad’s Day 0 while April 1st is more commonly known as April Fool’s Day to the rest of the us. Husband and I awoke to no AT&T cell phone service. AT&T had a wide spread outage that covered the entire Tampa Bay region and Sarasota. Some...
Day -5 through Day -1
Day -5, Sunday, March 27: Dad got settled into his room in the BMT (blood and marrow transplant) unit on the third floor of the Moffitt Cancer Center. His room is just a few doors down from his prior room in early March. Dad met with Dr. Ochoa, inservice BMT...
New Life Starts Here
Early in the week, we were notified that Dad’s transplant admission date was moved from Thursday, March 24th to today, Sunday, March 27th per the donor’s request. I have learned that the plan is that it never goes as planned. This delayed admission date,...
We Have a Date
Mom and Dad called me yesterday to notify me that Dad’s new admission date for his stem cell transplant is Thursday, March 24th, which is exactly one week from today. During this week, our family will be traveling to various parts of the country. Daughter and...
Will the Fourth Time Be a Charm?
Monday, March 14th at 2:00 p.m., Dad had his follow-up appointment with Dr. Ayala at the main campus of the Moffitt Cancer Center. The appointment started with Denise, transplant nurse, reviewing Dad’s current medications. She also asked about Dad’s...
Finally, We Meet Dr. Baluch
Since Dad’s discharge as an inpatient in the Blood & Marrow Transplant (BMT) unit at the Moffitt Cancer Center on March 1st, Dad has been going daily to Moffitt to have his central line catheter flushed and to receive blood support. He has been given blood...
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