by Jena | Feb 28, 2016 | Brentuximab Vedotin, Campath (alemtuzumab), Infectious Disease, Radiation Therapy, Stem Cell Transplant |
Friday evening, February 26
Since Dad was admitted very early Thursday morning, Dad’s oxygen saturation has been continuously monitored with a pulse oximeter on his fingertip. On Friday evening, his saturation level dropped enough to warrant oxygen supplementation. Mom stayed overnight with Dad in his room.
Saturday, February 27
Dad’s temperature was up and down throughout the day. A couple of times Dad experienced a fever that included chills and uncontrollable shivering. He continued to be on oxygen. Dad didn’t have much of an appetite and wouldn’t eat the Moffitt food.
Dr. Ayala, transplant doctor, visited Dad. Mom put me on speakerphone so that I could participate. Dr. Ayala had conferred with Dr. Velez, infectious disease. Dr. Ayala restated what we had heard from Dr. Velez on Friday afternoon. Dr. Ayala wanted Dad to stay another night due to his fever and chills. I inquired about the donor. Dr. Ayala said that the donor was willing to wait for Dad. Hallelujah! Dad is extremely blessed to have such a donor.
I believe the doctors attribute Dad’s bone marrow aplasia from his Campath (alemtuzumab) treatments. Campath is a monoclonal antibody directed against CD52, an antigen (marker) found on both B and T lymphocytes. The drug is used most often to treat chronic lymphocytic leukemia and has been used in the treatment of advanced CTCL. Mom has always questioned if Dad received too many Campath treatments and wondered why Dad wasn’t more closely monitored for bone marrow aplasia.
Dr. Ayala said that Dad is in a difficult position. He has fungal pneumonia because he essentially has no immune system. The only way to get a new immune system is to have a stem cell transplant. Dad must get well in order to receive the stem cell transplant. Dr. Ayala spoke in a way that he was not confident that Dad would be able receive a stem cell transplant in the future.
In the afternoon, Daughter and I went to visit Mom and Dad to bring some additional clean clothes for Mom and Dad since Dad was going to remain in the hospital. We also came bearing Chick-fil-A. Nuggets had to be more appealing than the flavorless Moffit food. Upon our arrival, Dad was extremely happy to see us and was slightly overcome with emotion. Perhaps it was the thrill of receiving Chick-fil-A! We could tell that he was quite uncomfortable and not his smiling, happy self. His eyes were dull and fatigued. He seemed physically agitated. Daughter and I were not expecting to see him this way. I sought out Dad’s nurse, Tammy, to give him something to take the edge off.
Since Dr. Ayala told Dad that he must get out of bed and walk, Mom now had a mission. Later in the evening, she had Dad up and moving around a bit. Dad ate dinner sitting in the chair.
Sunday, February 28
Dad was more lively today. Could it be the Chick-fil-A? He was sitting in the chair. Mom had plans for him to walk “laps” on the third floor of the Blood & Marrow Transplant (BMT) unit. At 12:37 p.m., Dr. Ayala and Karla, transplant physician assistant, came to visit Dad. Dr. Ayala listened to Dad’s lungs and checked his mouth and throat. Dr. Ayala found Dad’s throat to be clear and stated that it was much better. Dad hasn’t experienced any fever today. Dr. Ayala said that Dad looked better overall, especially as compared to yesterday. Dad is to remain at Moffitt tonight since Dr. Ayala wants to be cautious. Dad will be setup to be discharged earlier tomorrow. Dad will continue his antibiotics and anti-fungal medications.
Dr. Ayala did say that this fungal pneumonia was a major setback and that he cannot predict the future. He said that we will see if Dad is able to move forward with the stem cell transplant. Dr. Ayala sounded quite noncommittal. I don’t think Mom heard Dr. Ayala, yesterday, state the he was not confident about Dad’s ability to get a stem cell transplant in the future. Mom seemed surprised by Dr. Ayala’s statement today.
Mom inquired about the slow healing, necrotic egg on Dad’s head that now looks like a big, black mushroom. She wanted to know if it may contain fungus. Dr. Ayala said that it does not, because if it did, Dad would be experiencing pain and soreness at the site. Dr. Ayala doesn’t want to tamper with it as he believe it is healing. He said that the radiation therapy worked marvelously on Dad’s tumors including the egg. The plan is for Dad to see Dr. Baluch, infectious disease, and Dr. Ayala in a couple weeks in the BMT clinic. They will discuss another brentuximab vedotin treatment for Dad.
Before leaving the room, Dr. Ayala told Dad to go for a walk, and Karla said Dad would be receiving a platelet transfusion later today.
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 | 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.
by Jena | Jan 28, 2016 | Radiation Therapy |
Yesterday was Dad’s last TSEB (aka rotisserie) treatment. Dad had a sense of relief knowing that he no longer had to endure the medieval torture. Phew!
Today, Dad started with a routine blood draw. His hemoglobin level was acceptable at 8.7. The two neupogen shots, which Dad received on Tuesday and Wednesday, had been very effective. Dad’s white blood cell count was now at 2.16. Even though his white blood cell count is on the lower side for a normal adult, it was a dramatic increase from earlier in the week. Mark Honor, physician assistant, determined that Dad would not need to receive his third of three planned neupogen shots today. Dad’s platelet count was extremely low at 11. Dad is required to have his platelet count at 50 or greater in order to have his PICC (peripherally inserted central catheter) line removed and his central line catheter inserted on Wednesday. Thus, Dad received another platelet transfusion. He ended the day with spot radiation on his shoulder and the “egg” that now looks more like a dark crater.
by Jena | Jan 25, 2016 | Brentuximab Vedotin, Radiation Therapy, Stem Cell Transplant |
Dad’s Monday started early with a blood draw at 7:30 a.m. at the Moffitt Cancer Center at International Plaza (MIP). He then met with Mark Honor, physician assistant, at 7:45 a.m. Dad’s platelets are down to 13. His white blood cell count is low at 0.4, but his hemoglobin is looking fair at 9.5. Looks like the two bags of blood last week helped boost his hemoglobin. Dr. Sokol, hematology oncology, indicated that Dad should receive 3 shots of neupogen this week, on Tuesday, Wednesday and Thursday, to increase his white blood cell count. At 9:30 a.m., Dad received his second infustion of brentuximab vedotin. During the first 30 minutes, Dad received his pre-medications of Tylenol and Benadryl. Dad then received the brentuximab vedotin for the next 30 minutes without any side effects. At 12:45 p.m., Dad received his 6th of 8 TSEB treatments. When he says that the TSEB treatments are “unpleasant,” I can tell he is biting his tongue from saying what he really thinks. Only two more rotisserie sessions left.
How to wash your hands.
I am already somewhat germaphobic (and claim that Dad passed that gene onto me), but with Dad’s weak immune system, I am constantly washing my hands. I am always barking at Husband, Son and Daughter to wash their hands. Today, Son stayed home from school due to a terrible cough. Mom is highly concerned that I will end up with the same terrible cough, which would impact my ability to be there next week for Dad’s move-in day. Dad will be admitted as an in-patient for his stem cell transplant next week on Thursday, February 4th.
Time for me to wash my hands.
by Jena | Jan 22, 2016 | Radiation Therapy |
The original plan for this week was for Dad to complete his TSEB (total skin electron beam; aka the rotisserie) therapy.
Monday, January 18th: No appointments on Monday, January 18th, due to the U.S. Holiday for Martin Luther King, Jr.
Tuesday, January 19th: Dad met with Dr. Montejo, radiation oncology, to discuss his progress and to share with Dr. Montejo that his legs were quite red, tender, and slightly fragile. Dad had easily nicked his leg and had an open wound. Dad and Dr. Montejo discussed whether the tender, red state of his legs were due to the radiation or the disease. Dr. Montejo did not think it was due to the radiation treatments, but Dr. Montejo took a photo and sent it via email to Dr. Glass, cutaneous oncology, seeking his opinion. Dr. Montejo was pleased with Dad’s response to the radiation therapy overall. He said that Dad is “looking good.” Dad received his fifth of eight planned TSEB treatments that afternoon.
Wednesday, January 20th: Dad met with Dr. Montejo again to discuss Dr. Glass’ feedback on his legs. Dr. Glass seemed to think it could be due to the disease or the radiation. Dr. Montejo made the decision to pause Dad’s remaining TSEB treatments until next Monday.
Thursday, January 21st: Dad received a call from the Moffitt Cancer Center at International Plaza (MIP) in the morning asking Dad to come in for a blood transfusion (for red blood cells). Dad received one bag of blood.
Friday, January 22nd: Dad returned to MIP for a second bag of blood (for red blood cells). The nick on Dad’s leg is healing and has now scabbed over. His platelets are doing their job!
Dad has not been going to the gym as he intended, but he is walking more. Unlike those buried in snow along the East Coast of the U.S., Mom and Dad are getting outdoors and enjoying walks through the neighborhood. The weather in Tampa is lovely this time of year with highs in the 60s.
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