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.