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.
Written by
Stevediam
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Your a good son, very much like mine. I’m sure he was extremely proud of you as I am mine.
We all meet our maker and what we do on earth determines our legacy. From what I read here, his legacy is a good one. Sounds like he raised a fine young man.
I’m so sorry to hear this Steve and your love and pride for your dad beams brightly from every word and was matched by your absolute devotion to him. Any father leaving the world with that testimony has done his job well and left a paternal record to be proud of.
He fought a good fight against a cancer that isn’t as innocent as many would have us believe. I’m sorry you have no concise answers about his death but when you mentioned possible infection, fever and massively elevated heart rate, I wondered if sepsis had possibly been implicated.
My sincere and profound sympathy to you and your family and thank you for your good wishes for us all still fighting the good fight.
I am sorry for your loss. And I am happy for you that you got to spend time with your pops before he passed. Mostly the endurable in misery is not made from medicines or hospitals; but from love, goodbyes, and internalized strength from those who captivate your life and substance. Take care of yourself and yours.
So sorry to hear this news. CLL is NOT a “good cancer” it’s more like a cruel cat that likes to play with a wounded mouse for ages, often never quite finishing the mouse off. Glad you were able to be with your dad in his final hours. And I pray for you and your family Steve. May you know peace.
Thank you, steve, for sharing your father's CLL and your loving care. May you know continued blessings as you begin the coming to terms with the loss of your father's physical presence.
You have his loving presence in your heart and the separation is painfully tearing now. Time does serve us well as we become accustomed to a different relationship to our dearest others.
I can imagine you writing a diary, journal or memoir in the future and you may find in the next months that just writing down some of you memories of your father can be very helpful for you.
I read about your Dad with a heavy heart. I feel your pain. When through a similar experience with my Dad in 1992 -1993. He was diagnosed with Diffuse Large-B cell Lymphoma. Lasted a little over a year. He also passed at 72. Love and Prayers for you and the family. Jr.
I’m so sorry for your loss, Steve. I was also very close to my father who passed away in 2015. He lived with me for 16 years and so we felt the loss very deeply. Cherish the memories that you have of your father and as time passes, the memories will provide you with great comfort
I am so sorry for your loss. My thoughts and prayers are sent to you and your family. This is a hard time but try to cherish the time that you had with your father. Xxx
Reminds me of when I lost my Dad to NHL. Very tough time for you. You will never forget but you will smile again with time. He sounds like a great and admired Dad. Thoughts and prayers.
Your love for your father and your anguished frustration with this disease came through clearly - thanks for sharing your pain and the beautiful epitaph to your father -
I'm so sorry Steve...for the loss of your father and the anguish you and your family are going through. Thank you so much for sharing because I don't think there is a person on this forum who cannot relate to this. Your father sounds like a wonderful person who has a son who really honored him by writing a post so full of love. We all ache for you.
Sorry you lost your best friend and mentor. You’ve turned out to be the man he was proud to have raised. I have children just like you and they make me proud each and every day. Thanks for sharing such an emotional story of your loss.. God bless. Sally
I am so very sorry to read of your dad’s passing. Sending you and your family prayers for strength. Your loss is felt deeply in the hearts of all of us who continue to struggle with this disease and I join you in your wish that a cure is found in memory of your dad as well as all the others who have lost their lives to CLL much too soon.
Sorry for your loss. Your father was obviously a remarkable man to raise a son like you. Stay strong. Thanks for sharing your family's story. May his memory be a blessing.
Stevediam, your father was certainly blessed to have such love and comfort by his side throughout his treatment. May your father rest in peace, knowing that he has indeed raised a wonderful son. My condolences to your family.
So sorry to hear of your loss,but thank you for the courage and strength to have been able to tell this community about your dad, he would be very proud of you.
Gods speed and my deepest condolences. You are so right - we are always told we have the good cancer - this is a sobering reminder it’s like all the rest. You write with such eloquence and love. Thank you for posting.
My deepest, heartfelt sympathy Steve. I lost my best friend...my mum on the 8th February. She was 72 too . That was 18 years ago, I was 37. I still really miss her but the pain does get easier.
I read your story with great sadness for the loss of your beloved father. He was a brave man and also lucky to have you by his side. May he rest in peace and may and your family stay well. Live and best wishes to you all.
So sorry for your loss ... sounds like you have been a wonderful support for your Dad throughout and that he was fortunate to enjoy his relationship with you.
He succeeded in creating these warm relationships and the good memories he left behind will continue to be with you
Steve your love and devotion for your dad is so heartfelt. I am so sorry for your loss. It sounds like your dad fought the good fight and now he is at rest. My prayers are with you and your family.
My condolences Steve. You are a wonderful son being at your dads side through his journey. We like your dad are die hard Eagles fans and when they won my hubby said he could die now! Ironically I heard that mantra frequently in watching the Philly channels post game. Only an Eagle fan would understand and I am so glad he was able to watch his team bring it home. May your wonderful memories sustain you now. What a wonderful man he must have been. Prayers to you and all the family!
I’m sorry for your loss, I hope that as time passes you are able to remember more of the healthy times with your dad and the memory of the disease passes.
I am so sorry to hear of your loss. You went through a lot with him and I hope that many good memories of your time together will bring you comfort. Thank you for sharing.
Dear Stevediam, I am so sorry for your loss. You deeply loved your dad and were so devoted. Knowing that you did so much for him will help your mourning. I too go to Penn and am an Eagles fan. I am from West Chester. I will ask my priest son for prayers for your dad.
Reading your words makes me feeling sad. Will be a hard time for you. Remeber, we all will find our resting place one day. Meantime we should live and enjoy every second.
I have tears in my eyes reading your moving account of your wonderful father. Love and kindness radiate from every word, you were fortunate to have each other.
Sending love and best wishes to you and your family.
You and your family have all my prayers for your loss. I have CLL and feel very good, but I am acutely aware that I need to help my family along this road and prepare them because I love them very much as I am sure your Dad so loved all of you very much as well. Blessings to you.
My sympathies. I lost my mom from CLL in December of 2016 in a similar way due to sepsis. Since I also have CLL, infection is something to be on guard for constantly. You dad was way too young, but it sounds as if your family gave him great support. You sound amazing. This is so hard, but memories of my parents keep them alive. We celebrate mine in some small way on holidays still.
I'm so sorry for your loss. Losing a parent is so very difficult. What a wonderful son you are to a great Dad. I do believe you will see him again. Take care as I know from losing both my parents it is not an easy journey to take.
If your father could read your words he would be very proud indeed. Your love for him shines through. There are no greater riches in life than the love of a good family. Many do not have that. You gave him the best you possibly could and I hope that brings you some comfort. I am reminded of a poem someone sent to me when I lost my mum....
I am so sorry to hear about your father. My blessings go out to you, his wife, and all other relatives and friends. It sounds like your dad put up a good fight. Remember the good times, Steve. He would have wanted that. I will pray for you and your family. My love. Carole
Steve, I am so very sorry about the loss of your Dad. Your post was a beautiful and deeply poignant tribute to not only the special and wonderful man that you had been blessed to have as your father, but also an obvious reflection of the loving and devoted son that he was blessed to have as well. You and your family will be in my thoughts and prayers.
I’m so sorry to read this!!😭😭😭 all I can say is your parents did a lovely job of raising such empathetic children and was blessed to have you!! I read they increased the dose of imbruvuca? Why was he not given 3 capsules per day to start? Once again my heartfelt condolences. May your papa rest in paradise ! 🌸
Thank you. And to answer your question, when he started the ibrutinib, his platelets were 17k so they were nervous of a bleed. They started him with 1 pill daily and weekly platelet infusions which only lasted 3 weeks as the ibrutinib was doing its job with both his numbers and his physical ability/fatigue. 6 weeks in he was doing so well they decided to up the dose to 2 pills. Almost immediately he experienced the uncontrollable diarrhea, muscle/joint pains, would wake up with a black eye every morning and the toxicity just drained him to the point he looked worse than he ever did.
Can’t hekp but wonder what if they kept him at the 1 pill daily.
Awww so sorry to read this! May you find comfort in knowing your papa raised a wonderful Son as he himself must have been wonderful. Sending u love & light!
I am so sorry to hear of your sad news. I know what you must be feeling as I have been there losing both of my parents who I was very close to. No words will help now with your grief as it is so raw but trust that all of the folks here on this site are sympathetic to your feelings. You have my deepest sympathy and prayers.
I've tears in my eyes while writing this. I'm so sorry for the loss of your precious Dad! What an amazing relationship you had with him! May God give you and your family comfort during this sad time.
It sounds like your father was able to celebrate some memorable milestones in his final days. What a blessing that he was surrounded by love in his final hours. My best to you and your family as you heal from his loss.
Steve, my heart hurts for you. Your beautiful tribute to your father brought me to tears. I ,too, have 17p deleted and can only hope to have the wonderful, caring attention you gave your father in the end. Warmest regards, Nancy
I am so very sorry to hear that your dad lost his battle with CLL, Steve. I can hardly see my keyboard through my tears for you and your family, as I read your most heartfelt post. It is such a painful time for you and your family in this moment, but time will bring a more peaceful heart, where you will be able to celebrate the joyous memories of your most loved dad.
I'm very new to all of this. I'm so sorry to get this message. We all struggle through our lives to do the best we can for our friends and family. I am sad for your loss, but recognize the legacy your father left to you. Warmth, Love, a caring heart are wonderful qualities which he has passed on to you. Wishing you always the best for all of your families.
Steve - I am so sorry for your loss! We think, If we have experienced losses of others close to us that we understand the loss of a parent, until we experience it personally. It is a loss like no other. Your father was blessed to have such a caring and supportive son! The days do get easier, and the good memories will be yours forever. We are all here for you if you need to grieve, vent, share the good times, or just connect with people who understand!
My thoughts and prayers are with you and your family, I lost my husband to CLL on January 11th, he will always be with you, and your right this site is AMAZING.
“I’m so sorry” are simply words, but as a mother, diagnosed almost 5 years ago, I thank you for being an angel on earth for your Dad. You both were truly blessed to have each other.
So very sorry to hear of your loss but know you did everything you could to support your father. Be kind to yourself while you grieve and remember the good times.
Steve, I'm sure your Dad was extremely proud of you. You couldn't have done anymore. I cant add to all good wishes posted already. I will just say thanks as a Father with CLL. Good luck to you.
Steve,your post was so deeply touching and the love that you have for your dad is so evident.He must have been a very special man and from your post I am sure you are also.Being a Eagles fan myself,I am so happy he was able to see their big win.My thoughts and prayers are with you.You have suffered a great loss,please take care and thank you for sharing with all of us.with deepest sympathy,Pumpkin
May God bless his soul and help him to rest in peace . Your Dad was a Great person because he raised Great children , from what I read in your letter !!!
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