Day +12: Dad Moved to ICU Status
Dad has declined dramatically. Day +12, Thursday, April 14th. WBC: <0.01 k/uL CRITICAL H: 7.0 g/dL LOW P: 21 k/uL LOW Blood. Everyday, Dad’s 3 lumens (blue, red & white) of his central line catheter are tested. The day’s initial blue line...
Day +7 through Day +11
Catching you up from last Saturday to Wednesday… Day +7, Saturday, April 9th. WBC: 0.03 k/uL CRITICAL H: 7.3 g/dL LOW P: 16 k/uL LOW Dad had continued to go in and out of atrial fibrillation. By the evening, his heart was in normal sinus rhythm (NSR). Dad...
Day +3 through Day +6
Today is Day +7. Dad is doing fairly well considering he is in week two, which is one of the worst weeks that stem cell transplant patients endure. He has experienced a variety of issues as expected. Three blood counts are tracked daily…white blood cell (WBC),...
Day +2, Too Much of a Good Thing
Day +2, Monday, April 4th. Our two week spring break is over. Husband left the house at 4:30 a.m. to catch a flight to Ohio for work. Daughter was sunny and lively this morning despite still having coughing fits. She has one more day of antibiotics to address her...
Day +1, A New Phase for My Dad and Son
Day +1, Sunday, April 3rd. I texted Mom and Dad at 8:21 a.m. this morning to check on the two of them. Mom immediately rang and told me that Dad was not feeling well. He was nauseated and had vomited. It sounded as though Dad had started feeling bad sometime...
Finally
We are on Day 0, again. This morning Dad was given 3:00 p.m. as the targeted stem cell infusion time. Dad had another big breakfast of french toast (which he claimed was not very good), sausage, yogurt, banana, cottage cheese, diced pears, donut and coffee. Also...
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