by Jena | Dec 25, 2015 | Uncategorized |
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 night, we attended the Hyde Park United Methodist Church (HPUMC) Candlelight Christmas Eve service. I appreciate how HPUMC broadcasts most of its services each Sunday via live webcast. What a wonderful way to continue to minister to those who are homebound due to illness! It is important that the homebound feel connected.
Luke 2: 1- 7 The Birth of Jesus
2 In those days Caesar Augustus issued a decree that a census should be taken of the entire Roman world. 2 (This was the first census that took place while Quirinius was governor of Syria.) 3 And everyone went to their own town to register.
4 So Joseph also went up from the town of Nazareth in Galilee to Judea, to Bethlehem the town of David, because he belonged to the house and line of David. He went there to register with Mary, who was pledged to be married to him and was expecting a child. 6 While they were there, the time came for the baby to be born, 7 and she gave birth to her firstborn, a son. She wrapped him in cloths and placed him in a manger, because there was no guest room available for them.
Happy Birthday to Christ! This morning our family, dressed in our festive pajamas, gathered around the Christmas tree to unwrap presents with much anticipation. Our tummies were filled with scrumptious, traditional Christmas dishes including several favorites from The Junior League of Tampa’s The Life of the Party cookbook, Nanny’s famous Lime Jello Salad, and shaved Virginia country ham sandwiches. (Dad-in-law always hand carries the Virginia country ham on the airplane.) We wore our colorful paper crowns and shared jokes and trivia that came inside our individual Christmas crackers. We played our instruments, which had been stuffed into our stockings, to create a joyful sound! Mom and Granddaughter shook their tambourines while the men played their triangles.
Tonight, Dad donned his grey flat cap, which covered his reddish skin and new tumors, and his mask, due to his neutropenia, to attend the new national touring production of The Sound of Music at the Straz Center for the Performing Arts. Both, Mom and Dad, enjoyed the glorious voices of the cast and the magnificent notes of the orchestra. My 12 year old daughter (aka Granddaughter to Dad) and I “whisper” sang all the words to the famous Rogers and Hammerstein songs from “Do Re Mi” to “Climb Ev’ry Mountain.”
As Husband and I were walking in the front door of our house after the musical, Husband mentioned how he enjoys The Sounds of Music more with each viewing of the movie and the Broadway show. The song “My Favorite Things” helps us focus on the simple things, our favorite things, when we are feeling down.
“When the dog bites, when the bee stings,
when I’m feeling sad,
I simply remember my favorite things,
and then I don’t feel so bad.”
Merry Christmas!
by Jena | Dec 23, 2015 | Radiation Therapy, Stem Cell Transplant |
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 stated that numerous “spots” have appeared in Dad’s scan. They are not only on/in Dad’s skin, but tumors have appeared in a lymph node (groin – right side) and his bones. The two most significant spots in his bones are his lower spine and his rib cage on the right. Dr. Montejo wanted to know if Dad had been experiencing any issues with his lower back, but Dad has not noticed any pain there. No cancer was seen in his organs.
We are extremely saddened by the news of these tumors, but grateful of the time and attention that Dr. Montejo gave to Dad in sharing the PET scan results and discussing ways to treat the tumors. Dr. Montejo spoke with Dr. Sokol, malignant hematology, and Dr. Ayala, bone marrow transplant (BMT), and communicated the radiation treatment plan to them. We are awaiting word from Dr. Ayala and Denise LaFave, transplant coordinator, about the current stem cell transplant schedule of activities, which are supposed to begin next week. We do not know if the transplant activities will be delayed or put on hold due to these new tumors.
Henry B. Plant Museum’s Victorian Christmas Stroll
Today, Dad went in for his radiation simulation. The simulation was done in preparation for the radiation treatment. Detailed imaging scans were done to show the exact location of Dad’s tumors. Treatment begins January 4th and runs throughout January. The phases of the current radiation plan are:
- Treat the internal tumors
- Treat the subcutaneous tumors (leg & arm)
- Treat the cutaneous tumors
Mom works incredibly hard, 24 hours a day, providing Dad the BEST care anyone can receive. She deserves more breaks than she gets the opportunity to take. This morning we took Mom to the Henry B. Plant Museum’s Victorian Christmas Stroll. She was able to experience a bit of that Christmas spirit we all need right now.
by Jena | Dec 22, 2015 | Radiation Therapy |
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 Campath. Mom, Dad, and I have been a bit frustrated in how the blood management has been going to address Dad’s pancytopenia. By blood management, we mean…
We are seeking to improve the logistics of the blood transfusion process as Dad experiences each blood transfusion. We have learned…
- The blood draw order must be submitted in order to have Dad’s blood drawn so that the blood counts may be taken.
- The blood type cross match order must be submitted and scheduled to occur at the same time so that the blood drawn will be tested for compatibility between Dad’s blood and the donor’s blood. The blood type cross match has to be done for each and every bag of blood Dad receives.
- Each bag of blood takes 2 hours to transfuse. Dad requires two bags right now.
- Blood transfusion days are long days at the infusion center. A minimum of 6 hours is needed to complete the blood draw, testing and transfusion.
Today, Dad received his fourth blood transfusion, two bags of A+. Dad also met with Dr. Montejo, radiation oncology, to discuss how to address the new tumors that have appeared since Dad has stopped the Campath treatments. Dad has several cutaneous tumors on his head, shoulder, neck, back and arms. He also has two subcutaneous tumors on his arm and leg.
Over the next day, we hope to hear the results of Dad’s bone marrow biopsy and his skin biopsy. These results are key for Dad to continue down the path to his scheduled stem cell transplant next month.
- Bone marrow biopsy. It will indicate the health of the bone marrow. Dad’s bone marrow has taken longer than desired to recover from the last cycle of Campath. After prior cycles, Dad’s recovery was approximately one week each. There is a slight concern that the Campath treatments have permanently damaged Dad’s bone marrow to the point that Dad may now have myelodysplastic syndrome (MDS).
- Skin biopsy. This will indicate exactly what type of tumors have appeared and is input for Dr. Sokol to determine which systemic treatment may be given to Dad. Since Dad has not had subcutaneous tumors in the past, we are very eager to understand if anything has changed.
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