by Jena | Feb 18, 2016 | Stem Cell Transplant |
Yesterday, Dad’s second donor, the 19 year old from Germany, was to have his physical evaluation to confirm that he is able to serve as a donor for the stem cell transplant. As of 9:45 p.m. last night, Dad still hadn’t heard. We are a bit frustrated since there has been no communication from Denise, the transplant coordinator, about the donor’s physical evaluation results and a “surprise” appointment for a bone marrow biopsy scheduled for today. Dad attempted to reach Denise via phone and email yesterday with no success.
Dad was scheduled to be at the main campus of the Moffitt Cancer Center at 7:15 a.m. for his bone marrow biopsy. I suggested to Dad that he refuse the procedure until he received confirmation directly from Denise. Dad has been under going some repeat pre-transplant testing since some of the prior tests had expired after 30 days, such as the CT scan of his sinuses and chest. There had not been a discussion about a repeat bone marrow biopsy. We don’t want Dad to repeat tests unnecessarily.
We should learn more later today as Dad is scheduled to meet with Dr. Ayala, transplant doctor, at 1:00 p.m. today.
by Jena | Feb 6, 2016 | Uncategorized |
Dad will continue to receive regular blood support at the Moffitt Cancer Center at International Plaza (MIP) until it is time for him to be admitted for his stem cell transplant on February 21st. Dad’s latest blood counts indicated the need for a blood transfusion since his hemoglobin was 6.7, which is below the desired 7.0. His white blood cell count was 1.46, and his platelet count was 12. Yesterday, Dad went to MIP to receive two bags of blood to boost his hemoglobin level. By the afternoon, Dad was energized by the transfusion. A nice way to start the weekend.
by Jena | Feb 4, 2016 | Brentuximab Vedotin, Radiation Therapy, Stem Cell Transplant |
Upon arrival to the Moffitt Cancer Center this morning, I went straight to Starbucks on the first floor. As I stood in line to order my standard venti-skinny-vanilla latte and Mom’s tall-hazelnut latte, Krista, hematology oncology PA, greeted me with a hug…a real hug… long, tight, and meaningful. Krista is always a bundle of energy and full of smiles. She immediately inquired about Dad. I actually think she was a bit puzzled to see me at the Starbucks. She probably had assumed that I would be at the inpatient section of Moffitt with Dad in the Blood & Marrow Transplant unit. Krista hadn’t heard that Dad’s transplant had been canceled. Once I brought Krista up to speed, she gave me positive words of encouragement and wanted me to tell Mom and Dad “hello” and that she is thinking of them. Krista said that if anyone deserves the transplant…it is Dad. She also said she and Dr. Sokol miss Dad’s regular emails. I got a good laugh. Dad had smartly figured out the best way to communicate with Dr. Sokol and Krista was through email. With an iPhone constantly in Dad’s hands, Dad was often an emailing machine, communicating daily with Dr. Sokol and Krista. I teased Krista saying they were probably glad to get a break from Dad’s barrage of daily emails.
Upstairs, we first met with Denise, transplant coordinator. She wanted to review what had transpired since we met with her and Dr. Ayala last month. Dad described the radiation and brentuximab vedotin treatments. He recounted the blood and platelet transfusions he received along with the neupogen shots. Dr. Ayala came in and gave Dad a thorough physical examination of his tumors and skin. The tumors on Dad’s head are nicely reduced but black and scabby. Dr. Ayala noted that Dad had “active” borders on a couple of the tumors on his head. The subcutaneous golf-ball sized tumor, near the crook of Dad’s left arm, is now gone. Overall, Dr. Ayala was pleased with the results of the radiation and brentuximab vedotion treatments. He could not discern which of the treatments or both were having the positive impact. Dr. Ayala confirmed that Dad has reached his best opportunity for a stem cell transplant. Thus, Dad is moving forward with the younger donor…19 years old, living in Germany.
The updated schedule of events:
February 11th: Repeat of some pre-transplant testing, which expired after 30 days. (CT scans of his sinuses and chest, labs, flow cytometry to check the Sézary count)- February 15th: Receive third brentuximab vedotin infusion
- February 17th: Physical evaluation of the 19 year old donor
- February 18th: Follow-up visit with Dr. Ayala
- February 19th: Removal of PICC and placement of central line catheter
- February 20th: Flush the central line catheter
- February 21st: Admission for stem cell transplant
In an ironic way, I enjoy the doctor visits with Mom and Dad. One’s true character shows during difficult times. I am constantly amazed at the sustained strength both, Mom and Dad, exhibit. Their interactions with the medical staff are always upbeat and spirited. Lots of laughter, jokes, hugs, and gratitude are vividly on display during each visit. This is irregardless of who the medical staff are…from the most educated and experienced doctor to the new, fresh-out-of-school technician. If you were to walk by the exam room, you would not suspect that we are discussing cancer and the risk of death.
by Jena | Feb 3, 2016 | Stem Cell Transplant |
This is the week. Or so we thought. Plans were in place. Preparations were completed with anticipation that Dad would be admitted as an inpatient to Moffitt tomorrow. One of Dad’s key preparations was to get his 2015 taxes prepared and sent to his accountant. On Monday, while standing at the UPS counter to ship the tax paperwork to his accountant, Dad received a call from Denise, the transplant coordinator. Dad’s donor did not pass his physical evaluation. There would be no transplant at this time.
Rather than moving Dad into Moffitt tomorrow, we are meeting with Dr. Ayala, transplant doctor, to learn about next steps. I believe Denise is seeking the availability of Dad’s second “perfect match” donor. The second donor is a 19 year old male, who was unavailable the month of January and most of February.
The timing of the radiation and systemic treatments Dad has just undergone in January was perfectly aligned for Dad to be admitted this week and receive the stem cells next week. Timing is crucial to increasing the chances of a positive outcome of the transplant. The goal is to have reduced the cancer in Dad’s blood and his skin, as much as possible, at the time the donor’s stem cells are transplanted to Dad.
Dad is racing against the clock for a transplant. How quickly will Dad’s cancer come back? What treatments can Dad endure to sustain him until the second donor is available? How long must Dad wait? Is the second donor healthy enough to pass his physical evaluation, unlike the first donor? We shall see.
by Jena | Jan 29, 2016 | Advanced Funeral Planning, Radiation Therapy |
Dad completed his second of three planned spot radiation treatments on his shoulder and the “egg” on his head. Dad dons his grey, flat cap when he is out in public these days. He has a large, bright blue oval, hand drawn in marker, around the “egg.” The oval is used as a guide during the radiation treatment. His tumors are vehemently necrotic with crusty, black scabs on his head as if the angered tumors are protesting their own death from the radiation. Good riddance tumors!
Earlier, in the morning, Dad had called me asking if I was available at 4:00 p.m. to meet with the funeral planner. That is certainly not the typical call to receive from your dad nor anyone else. Upon entry into the Blount Curry Funeral Home in the afternoon, we were immediately overwhelmed by the smell of roses. All three of us started searching for the source of the strong, rose scent. I was anticipating multiple, large vases filled with beautiful roses. Perhaps, a service had just ended. No roses were to be found. I then immediately thought of President Snow.
An odd thought to have…at an odd time…at an odd place. For those of you who read the Hunger Games trilogy, you will recall President Coriolanus Snow, the main antagonist, and his passion for white roses. In the books, President Snow grows genetically enhanced roses to increase their scent and wears them in his lapel to disguise the smell of blood on his breath.
The funeral planner started the meeting commending Mom and Dad for being there. She was also impressed that I, the daughter, was present. Even though advance funeral planning is on the rise, I imagine it is still not the norm. The funeral planner explained the advance planning process and answered our questions. There were some awkward moments in the meeting. For example, Dad asked me where Husband and I were going to be buried since it may influence Mom and Dad’s burial location. Husband and I have not had that discussion. But, I did make it clear that Mom and Dad should be buried where they want, not where Husband and I will be. With families becoming more mobile and not residing in the same hometown, the family plot is not as large of a requirement as it once had been. Husband and I have space available in family plots in separate states.
One decision made during today’s meeting is Mom and Dad will be buried in Arlington National Cemetery. Dad had a full military career as an officer in the U.S. Air Force. Dad comes from a long line of those who served in our military back to the American Revolutionary War. We are extremely proud of the men and women who fought and died to provide Americans the freedoms and democracy enjoyed today. We also never forget the sacrifices of the families supporting those in the military. Mom noted that Dad would be close to the Vietnam Veterans Memorial. Dad’s younger brother is listed on panel 05E.
We later learned from the funeral planner that the rose scent is from an artificial fragrance being diffused within the funeral home. In a similar manner used by President Snow, the reeking rose disguises the smell of death in the funeral home.
I no longer care to smell another rose.
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