It is with a heavy heart I write this post. My father passed away on Thursday, Feb 8th. I brought him to the hospital on Monday as he had horrible pains in his ear and throat and was growing weak. His condition deteriorated with slight signs of pneumonia, ear infections and a loss of appetite, speech and strength. He was put on a ventilator Wednesday morning and brought to the ICU. He almost immediately gained a sustained fever of over 104, reaching as high as 107. He had a seizure. He had some blood being pumped out of a tube in his nose, yet the CT Scans showed no evidence of bleeds. His blood pressure began to drop and his heart was consistently racing at 140 beats.
In the end, his heart gave out, and he passed away with his two grieving children by his side, holding his hands and telling him we loved him. I can only hope he could hear us.
My father was 72.
He was 17P deleted. Original diagnoses 2009. Treated with FCR, reacted great and went into remission. 17p then reappeared around November 2015. We went to the hospital of the University of Penn and found a great hematologist and and even better supporting team of nurses. He tried Ibrutinib July 2016 and had a beautiful response the first 6 weeks which was one of the last times I’ve heard my father say “boy I feel great”. In mid August 2016, the dose was increased and the toxicity levels and side effects became too much to bear. He stopped in October and was lucky to start a clinical trial of TGR1202 on November 2nd 2016. This drug stabilized his disease and the all powerful CBC results but never helped with his fatigue. Due to disease progression, he had to stop the trial just over 1 yr later on Nov 5th 2017. Two days later he was put on Venetoclax. The Ven severely lowered his counts, and we ended up spending over 24 days as an inpatient. I never left his side. The Ven was stopped on 17 Nov 2017.
He was lucky enough to be discharged for thanksgiving to enjoy what would be his last one, then admitted back the very next day.
He was then again discharged on dec 1st, which allowed him to spend his 72nd and final bday at home with family.
Since that time, his CLL was left untreated as his team at both UPENN and the VA were trying to procure acalabrutinib for him. He was taking 30mg of prednisone during this time along with 100mg of promacta to treat his newly diagnosed ITP and raise his platelets.
He was once again admitted to hospital on Jan 13th 2018 with pneumonia, but as my father has always done, he healed up nicely and returned home to us on Jan 17th, the day just before we would celebrate his wife of 41 yrs birthday.
His first day of our new “hope” pill acalabrutinib, was on Monday, Feb 5th, the day I had to take him back to the hospital, which he wouldn’t return from.
A life long Eagles fan, my father was able to watch them win their first super bowl from the comfort of his home.
In the end, we have no concise answers about his death. Maybe infections took over his body? Maybe there was an internal bleed? Perhaps both caused his fever and heart rate to rise? Perhaps he had given all he could?
I’m thankful to have been there with him through all of this, and I’m thankful for this site. I’ve learned a lot from it over the past two years and feel for all who are suffering from this disease. For those that say “CLL is the good cancer”, well, maybe they’re right, but it certainly yields its ugly head and in my opinion, it’s just as nasty as the rest.
I’ve met some amazing professionals along the way who are doing all they can to find a cure for this disease, and I pray they do, in my fathers name.
Rest In Peace Dad, my best friend. You’re an inspiration to us all. We love you always and forever.