by Jena | Apr 3, 2016 | Stem Cell Transplant |
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 during the night after Mom had left. Mom declared she was feeling 100% fine and wanted to go to Moffitt. I packed Mom a couple of the frozen foods I picked up from Trader Joe’s on Friday. I also sent along a dozen, delicious celebratory Gigi’s cupcakes for the medical staff. I knew Dad wouldn’t eat any cupcakes in fear that they would cause him harm during his immunosuppressed state. By 9:30 a.m., I dropped Mom off at the Moffitt Cancer Center.
Dad didn’t eat any breakfast. Who could in a state like that? Mom worked on getting Dad to eat a bit of potato soup for lunch. Dad then spent the remainder of the day feeling nauseated. He attempted to get some rest when he could. For dinner, Dad had another round of potato soup.
Tonight was a special night for Son. At 6:00 p.m. in the same church Son was baptized as an infant, Son was confirmed along with 32 other young ladies and gentlemen. In the United Methodist Church, confirmation is the first time a person publicly declares his intention to live out the vows of the baptismal covenant. During tonight’s ceremony, I had wished that Mom and Dad were able to witness Son standing behind the pulpit giving his personal testimony about the confirmation process and to celebrate this milestone in Son’s spiritual journey.
During my last checkin via FaceTime tonight, I could see that Dad was still miserable. They were waiting for the nighttime nurse to bring more anti-nausea medication. I asked Mom if she, herself, had eaten. She said that she ate the rest of Dad’s dinner since he could only eat the soup. Over FaceTime, I perceived to see Mom sniffing. She quickly denied that she was sniffing.
I cannot wait to be in Dad’s room, in person. I feel extremely hindered. I am praying that any lingering sign of my sinus infection is gone tomorrow. If so, I am heading directly to Moffitt after I drop Son and Daughter off at school.
by Jena | Apr 3, 2016 | Stem Cell Transplant |
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 this morning, another member of the family became sick. Son now has a cold. I told Husband that he needed to stay away from us (Son, Daughter and me). We need him to be the healthy chauffeur for Mom.
In early afternoon, Dad was notified that his stem cell infusion was delayed to 8:00 p.m. due to a flight delay. I wondered if it was due to all the stormy weather occurring in Tampa. Dad was unsure.
While FaceTiming with Mom and Dad around 4:30 p.m, Dad stated that Mom was anxious. Mom looked restless. Turning every which way, she couldn’t sit still in the lounger. Mom reminded me of an antsy toddler. Perhaps, it is because she is so petite, and the lounger swallowed her. Mom was eager to get these stem cells infused.
Later in our FaceTime call around 5:00 p.m., the nurse came into Dad’s room declaring that the stem cells were at Moffitt. We were all pleasantly surprised by this news. Dad stated he wanted to take a shower first. The nurse immediately said “No!” The nurse sounded hurried and wanted to get Dad’s pre-medications started immediately anticipating a 5:30 p.m. infusion start time.
Mom then rushed to get Dad changed into his pajamas. Once his face was washed and teeth were brushed, the nurse came in and announced that the infusion was pushed back to 6:00 p.m.
Dad was given his pre-meds. He was hooked up to his blood pressure machine and a pulse oximeter, which measures Dad’s oxygen level. Once Dad’s new stem cells were ready, the Cell Therapy Technologist brought them to Dad’s room. The stems cells looked reddish pink and were in a large bag. Dad also had a few bags of saline hanging on his tree. The Cell Therapy Technologist and Dad’s nurse visually inspected the stem cells and verified that Dad’s name and MRN (medical record number) matched what was noted on the stem cell bag. The stem cells were not sent through the pump. They were freely dripping on their own from the bag down to Dad’s central line catheter. It was a beautiful sight…seeing those healthy stem cells going into Dad!
Dad’s vitals were taken every 15 minutes during the first hour of the stem cells being infused. During the first hour, Dad ate his dinner, which consisted of roast beef with gravy, mashed potatoes with gravy, brussel sprouts, ice cream and chocolate cake. Mom didn’t bother to eat dinner. She claimed she was too tired to eat. Dad said he hadn’t seen her this tired. She was a bit on edge. Mom must have been exhausted from the poor quality sleep and the anxiety caused by the delay in the arrival of the stem cells.
One odd bit about the donor. There seems to be some confusion about who the donor is. For the past day, Dad had been told that the donor’s blood type was O+ and that in nine months, Dad’s blood type would change from A+ to O+. Dad said they kept referring to a 31 year old. We know that is not the case since the 31 year old donor had failed his physical evaluation. Dad believes that some of the staff didn’t know the full story about the older donor and that Dad had moved to the younger, 19 year old donor. Dad was happy to learn that the donor is actually A+, which is the same as Dad’s blood type. Dad believes the 19 year old donor has A+ blood. We’ll have to sort this out later.
When speaking with Dad about 9:30 p.m., he said that his temperature only “spiked” one degree and then went back down. The nighttime nurse, Zach, indicated this was a positive sign. Dad didn’t give Zach’s statement much weight.
Dad also told me that Mom seemed to be sniffing a bit as if she had gotten a runny nose. I stated that Mom needed to come home immediately and offered to send Husband to stay with Dad. Dad was in favor of Mom going home, but he was adamant that Husband not come in her place. Dad said that he would be cared for just fine without Husband having to stay the night at Moffitt. I pushed backed, and Dad took on that voice of “I am in charge and what I say goes.” To keep Husband away from any possible illness Mom may have, I picked up Mom around 10:00 p.m. While in the car with Mom, Mom declared that she was fine, and her sniffles would be gone by morning. I stressed to Mom that she would be putting Dad’s life in jeopardy if she were to ignore any sign of illness and to pretend she were healthy. I wasn’t convinced she was truly hearing me.
by Jena | Apr 1, 2016 | Fludarabine, Melphalan, Stem Cell Transplant |
Today is Dad’s Day 0 while April 1st is more commonly known as April Fool’s Day to the rest of the us.
Husband and I awoke to no AT&T cell phone service. AT&T had a wide spread outage that covered the entire Tampa Bay region and Sarasota. Some AT&T customers thought it was an April Fool’s joke. The outage was caused by cutover issues related to the terribly poor transition of Verizon Fios’ operations to Frontier Communications. The good news was that our household still had internet connectivity (even as a new customer of Frontier Communications) and that Mom and Dad are Verizon cellular customers. We were still able to communicate with Mom and Dad.
Husband picked up Mom at 9:00 a.m. to take her to the Moffitt Cancer Center. Mom and Dad are extremely thankful for Husband chauffeuring Mom back and forth to Moffitt. They are always expressing their gratitude. We are extremely concerned about having Mom ride in one of our cars since Daughter and I are both sick. Dad asked Husband to drive Mom back and forth in a non-contaminated car. Husband has been wiping down the interior of the cars to help reduce the spread of any illness.
After breakfast, Dad learned that his new stems cells had been delayed…until tomorrow, Saturday, April 2nd, in the afternoon. Ugh. Thus, an extra day of rest while Dad pauses Day 0.
Dr. Ochoa, inservice BMT, visited Dad. Dad spoke of two concerns. The first was that the tremors have gotten slightly worse in his hands and arms. Dr. Ochoa believed that it is the chemotherapy affecting Dad’s brain. Dr. Ochoa didn’t believe it is caused by the chemotherapy affecting Dad’s muscles. Dr. Ochoa requested that a neurologist examine Dad. The second issue was that the tops of Dad’s feet are quite red. Dr. Ochoa was not concerned. He believed that the redness may be caused by Dad’s low platelets or the chemotherapy.
When the neurologist came to see Dad, the neurologist was impressed by Dad’s mobility. In fact, when he first saw Dad, he questioned if Dad was even the one he was to examine. This was because the neurologist had spotted Dad walking his two miles. The neurologist came to the same conclusion as Dr. Ochoa…it is chemotherapy affecting Dad’s brain. Based upon the half-lives of the two chemotherapies, fludarabine and melphalan, we anticipate the tremors to stop soon.
Dad’s platelets were fine. His hemoglobin level was a little low so he received one unit of blood.
Both, Daughter and I, went to visit our fabulous family doctor, Dr. Martha Price. I told Dr. Price that Daughter and I need to be healthy again, ASAP. Dr. Price was already familiar with Dad’s situation. She understood the urgent need to be cured with Dad being in the BMT (blood & marrow transplant) unit for his stem cell transplant. I was diagnosed with a sinus infection, and Daughter was diagnosed with bronchitis. Dr. Price went heavy handed, more so than usual because of Dad, with her prescriptions to help speed up our recoveries and to address any possibility of bacterial infection. Dr. Price said that I could not be around Dad for 4 – 5 more days. Daughter was told even longer at 5 – 7 days. That assumes we are feeling good at those points in time.
Midday, I went to Trader Joe’s in an attempt to purchase fruit, salads, sandwiches, and a few frozen meals that Mom can cook in the microwave. Mom has limited options when staying at Moffitt. There is a shared family refrigerator for her to share with others. Mom said it was quite full. There is no proper stove nor oven to cook food…not even a toaster oven…only a microwave. During my grocery shopping, I was texting and snapping and sending photos of a variety of frozen foods that could be cooked in the microwave. Microwaved meals. How unappealing! I tried my best to select dishes that had a hope of tasting palatable. Mom was not interested in most of my offers.
While FaceTiming with Dad yesterday afternoon, Dad was constantly hiccuping. This was believed to be related to the same chemotherapy effects Dad is experiencing with the tremors.
Day 0…the day Dad was to be infused with the donor’s stem cells! April Fool’s!
by Jena | Mar 31, 2016 | Fludarabine, Infectious Disease, Melphalan, Stem Cell Transplant |
Day -5, Sunday, March 27: Dad got settled into his room in the BMT (blood and marrow transplant) unit on the third floor of the Moffitt Cancer Center. His room is just a few doors down from his prior room in early March. Dad met with Dr. Ochoa, inservice BMT doctor, and Karla Adams, inservice BMT physician assistant. Dr. Ochoa is a jokester, which means that Dad will enjoy his visits with Dr. Ochoa. Karla was extremely friendly, as usual, providing Mom and Dad with hugs.
Mid-afternoon, Dad viewed our church’s Easter service online. Afterwards, Dad received some fluids intravenously (saline).
Dad was slightly pleased with his Moffitt dinner and claimed that it was better than before. After Dad finished dinner, he and Mom walked a mile (11 laps in the BMT unit).
Around 9:00 p.m., Dad started receiving pre-meds for his fludarabine (1st of 4), the conditioning chemotherapy. The earlier plan was for Dad to take steroids as a pre-med for each conditioning chemotherapy. However, Dr. Ochoa gave Dad a milder anti-nausea and anti-vomiting pre-med instead. Dad got along fine with these changes. The purpose of the conditioning therapy before a stem cell transplant is to destroy the cancer cells in the body. The dosage received is much higher during conditioning therapy than in the course of normal treatment. Dad didn’t experience any negative side effects during the infusion.
As anticipated, Dad has already met some of his neighbors, Dan and Jamie. Both are younger. Mom and Dad guessed that they are in their 30s. Dan and Jamie are a few days ahead of Dad in the stem cell transplant process.
Day -4, Monday, March 28: This was Dad’s real birthday. He turned 76!
Dad had a good night’s rest. Mom tried out the pull out sofa in Dad’s room last night. She found it to be rather hard. Dad had breakfast and walked one mile in the morning. Dad then saw Dr. Ochoa, who was very pleased with Dad’s status and talking.
Dad saw Dr. Baluch, BMT infectious disease, in the afternoon. She changed one of Dad’s medications and cautioned him as he is very suspectible to infection. His CD4 count was 30. The normal count is 500. Dr. Baluch said that Dad has to be very careful and follow their instructions to minimize the risk of infection.
In the evening, Dad’s pre-meds got started around 9:30 p.m. His fludarabine (2nd of 4) started flowing about 10:00 p.m. He didn’t experience any negative side effects.
Day -3, Tuesday, March 29: Dad had breakfast and then walked a mile. He saw Dr. Ochoa, inservice BMT. Dad’s Moffitt provided lunch was chef salad, pasta with chicken, and carrot cake. Dad spent some time on his laptop. Later in the day, Dad walked two more times at half a mile each. His goal is to walk two miles everyday.
Husband picked Mom up from Moffitt after Dad’s evening shower so that she could do some laundry and get a solid night’s rest at home.
Since we came home from spring break, I haven’t been able to visit Dad, in person, due to my being ill. Each day, Mom and Dad ask if I am feeling better. They are eager to have me visit in person rather than via FaceTime.
Dad received his fludarabine (3rd of 4) later in the evening with no negative effects.
Day -2, Wednesday, March 30: Dad woke up feeling fine. Husband picked up Mom at 9:00 a.m. and took her to the Moffitt Cancer Center. Sweet Daughter had offered to lend Dad her Bose wireless speaker so that Dad could listen to music on his iPhone. Husband visited with Dad and setup the speaker with Dad’s iPhone.
Dr. Ayala, Dad’s BMT doctor, stopped in to visit Dad. This made Mom and Dad very happy.
Mom went to the optional caregivers gathering, which occurs each Wednesday. Mom found it to be interesting and very informative. She learned that each BMT patient, currently in the BMT unit, has a different form of cancer.
This was the last day of Dad’s conditioning 
chemotherapies…the double-doozie of fludarabine (4th of 4) and melphalan. Melphalan is the chemotherapy that is likely to give Dad mouth sores, oral mucositis. These usually appear 5 – 10 days after the melphalan is received. Mucositis can then last 7 – 14 days. To minimize Dad’s risk of getting mucositis, Dad used oral cryotherapy. The idea behind the oral cryotherapy is to make the mouth cold enough that the blood vessels in the mouth constrict and reduce the amount of Mephalan in the mouth. Dad packed ice pellets into every nook and cranny of his mouth and contained them in his mouth for 75 minutes. He went through four cupfuls of ice. Dad found it to be quite the challenge. Mom claimed that Dad was screaming while his mouth was full of ice.
Day -1, Thursday, March 31: Dad started his “off day” with a large breakfast of french toast, sausage and donuts. It was an off day in that Dad had a day of rest. No more conditioning chemotherapies. Dad was feeling good and enjoying a new album I gave him for his birthday, Gone Like the Cotton from the Cox Family, which was produced by Alison Krausse. Dad’s favorite song on the album is “Cash on the Barrelhead.”
Dad walked his two miles in three phases. Later in the evening, after Dad’s bedtime shower, Husband picked up Mom so that she could get quality sleep in her own bed.
While sitting in his lounger that night, Dad experienced some tremors in both hands and arms.
by Jena | Mar 27, 2016 | Fludarabine, Stem Cell Transplant |
Early in the week, we were notified that Dad’s transplant admission date was moved from Thursday, March 24th to today, Sunday, March 27th per the donor’s request. I have learned that the plan is that it never goes as planned. This delayed admission date, along with Dad’s strong insistence, encouraged me to fly out West on Tuesday to spend spring break with Husband, Son, and Daughter.
How apropos that Dad’s new admission date is Easter Sunday, and our church’s Easter sermon is “New Life Starts Here!”
FaceTiming with Dr. Ayala and Diane
On Thursday while on the mountain, I virtually participated in Dad’s pre-admission appointment with Dr. Ayala, transplant doctor, via FaceTime. I felt comfortable participating virtually since Dad has had two of these appointments in the past prior to his previous admission delays. The appointment was rather routine in that Dad’s medications were reviewed. Dr. Ayala conducted a physical exam. Dr. Ayala confirmed that we were well aware of the risks and acknowledged that we have had this “risk” discussion several times now. Diane, transplant coordinator filling in for Denise, provided an updated calendar depicting day-by-day transplant activities.
Kubi by Revolve Robotics
Dad continues to be amazed by today’s technologies. Husband and I have been discussing additional technologies that would allow us to be in Dad’s room, during his monthlong stay, when we cannot be there the moment the team of doctors make rounds each day. A high-end solution, Double 2 by Double Robotics, is being used in hospitals today. One example is of a teenage lymphoma patient continuing to attend school virtually from his hospital room. I personally like the Kubi by Revolve Robtics as a moderately priced solution.
Dad called the Moffitt Cancer Center this morning to confirm a noon availability of his bed on the BMT (blood & marrow transplant) floor…his bed is ready and waiting for him. If it had not been ready, he would have gone to the BMT clinic at noon to get his first conditioning chemotherapy, Fludarabine, underway while waiting for his bed to become available. During Dad’s Thursday appointment, Diane shared that there are currently 7 or 8 inpatients in progress with their stem cell transplants. Dad will be moving into their BMT neighborhood. Knowing Dad, he will chat them all up within the first few days of admission. I hope they are ready for Chatty Daddy.
Dad’s journey to a new life begins today. Alleluia!
https://youtube.com/watch?v=PBvU7arNhQs%3Frel%3D0
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