Day +22: The Herpes Family
Day +22, Sunday, April 24, 2016 WBC: 2.86 k/uL LOW H: 9.7 g/dL LOW P: 11 k/uL LOW BUN: 83 HIGH Cr: 4.7 CRITICAL Na+: 143 NORMAL Mentation. Dr. Ochoa-Bayon, inservice BMT, found Dad to be somnolent, but rousable. At times, Dad mumbled and was able to follow...
Day +21: Dazed and Confused
Day +21, Saturday, April 23, 2016 WBC: 2.67 k/uL LOW H: 7.6 g/dL LOW P: 21 k/uL LOW BUN: 85 HIGH Cr: 4.9 CRITICAL Na+: 145 Mentation. Dad was sleepy and lethargic when Dr. Ochoa-Bayona, inservice BMT, visited. Yet, Dr. Ochoa-Bayon was able to arouse him. Dad...
Day +19 & Day +20: Dad’s Confusion Begins
Day +19, Thursday, April 21, 2016 WBC: 1.43 k/uL LOW H: 8.5 g/dL LOW P: 18 k/uL LOW BUN: 83 HIGH Cr: 4.3 CRITICAL Na+: 150 HIGH Mentation. Dad was alert when Dr. Ochoa-Bayona, inservice BMT, visited. He oriented to person, place, and time, but he closed his...
Day +18: Engrafted and Out of ICU!
Day +18, Wednesday, April 20th. Dad was transferred out of ICU back to the BMT (Blood & Marrow Transplant) floor. WBC: 1.04 k/uL LOW H: 8.8 g/dL LOW P: 16 k/uL LOW BUN: 69 HIGH Cr: 3.4 HIGH Na+: 147 HIGH Mentation: During the night, Dad was extremely...
Day +14 through Day +17: More Days in the ICU
Day +14, Saturday, April 16th. WBC: 0.06 k/uL CRITICAL H: 7.7 g/dL LOW P: 10 k/uL LOW Cr: 5.1 CRITICAL Na+: 152 CRITICAL Blood. The atypical Gram-negative bacteria was finally identified as Achromobacter xylosoxidans. Looks like an extremely difficult...
Day +13: 1st Day in the ICU
Dad was moved to the ICU on the second floor. Day +13, Friday, April 15th. WBC: 0.08 k/uL CRITICAL H: 7.4 g/dL LOW P: 18 k/uL LOW Cr: 3.9 HIGH Na+: 148 HIGH Blood. All three lines (blue, red & white) in Dad’s central line catheter indicated...
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