My father was diagnosed with chronic lymphatic leukemia (CLL) approximately 2 1/2 years ago. This was discovered on a routine medical check-up by a blood test that revealed a higher than normal "white" blood cell count. This is fairly typical of how the disease initally presents.
Persons who have a family history of CLL are three times more likely to get the disease then the general population although the risk is only 3 in 10.000 vs 1 in 10,000.
The cancer is not caused by an inherited CLL gene despite the above statistic. However the tendancy to have a particular gene mutate may be what is inherited. In CLL a normal gene mutates (changes from normal configuration and activity) in the DNA of a particular chromosome in the stem cell (precursor) of a lymphocyte. This causes overproduction of an immature lymphocyte which does not differentiate properly into one of three types of mature lymphocytes (blood cells).
The prognosis for people with CLL is 3- 5 years or 7 - 15 years depending on the type of lymphocyte involved. There are three types of CLL. In my father's case, he had an overproduction of the T cell lymphocyte("white" blood cell). This is determined by antigen/ antibody testing performed after a patient becomes symptomatic of the disease. The T cell lymphocyte is a precursor cell to a fully matured lymphocyte. When the bone marrow over produces these immature lymphocytes, "red" blood cell production is affected (decreased). This results in anemia.
He had been asymptomatic for about two years except for the high "white" blood cell count. Then in September he was found to be anemic needing a unit of packed cells after a routine three month checkup. It was then decided that he should start chemotherapy.
He was initially put on Fludarabine (Fludara) at the outpatient hospital oncoloygy unit in Dover, NH. He was in good spirits even though he had to visit the oncology unit for 1 week every three weeks for IV chemotherapy. He started needing more blood and then platelets in addition every two weeks.(One side effect of Fludara is lowered production of platelets (which helps blood to clot) causing nosebleeds. The Fludara only had about a 40% chance of curing the leukemia but Dad was willing to try.
He became more and more tired, only walking (it runs in the family) one lap around the Newington Mall vs his usual four laps. The "walking club" members took notice and encouraged him whenever they saw him, though some did not know why he had slowed down.
He was then switched to another type of chemo (don't remember the name) but continued to need two units of packed red blood cells and 1 unit of platelets now every week.
He was admitted to Portsmouth Regional Hospital, NH on Sunday, January 13th due to septicemia (blood infection from pseudomonas) and pneumocystis (an infection in the lungs) due to becoming immunosuppressed from the chemotherapy. He was put on a ventilator less than 24 hours later. I left work, alone, that Monday afternoon driving (Logan had closed) to New Hampshire on the heels of a big New England snow storm not knowing if I would ever be able to have a conversation with him again.
My sister who lives the furthest away, in Seattle was actually the first of us to arrive at the hospital. She flew into Logan airport about a half hour before it closed that Monday morning.
When I got to the ICU room I was not prepared for what I saw. He had been having nose bleeds due to low platelet counts caused by the Fludara and had dried blood encrusted completely blocking his nasal passages. They did not want to remove it due to the potential for further bleeding. He was on three IV antibiotics. His blood pressure had dropped to 80/40 and he was running a low grade fever. His platelet count had dropped to 4 (4K) and he was receiving 2 units of packed cells and a unit of platelets. He was on A/C at 75% and 15 of PEEP with Diprovan sedation.(You'll have to excuse the abreviations, I'm a Respiratory Therapist).
This was not the Dad I knew; a robust, 4 -loop mall walker who never tired, never complained, had always been in good health, who had taught me how to face the world by meeting any problem head-on. To see him laying in a hospital bed with a tube in his thoat, immobile, unable to communicate his thoughts or wishes was more than I could handle (even though I see patients in this condition every day where I work.) It is so different when the one lying in the hospital bed is a loved one… the person who taught you most of what you know.
Well, suprisingly Dad recovered from the infections and was off the ventilator exactly one week later. (the day after I left for PA.). He was a fighter, and was not going to give up so easily. He steadily improved with P.T. off of the vent for another week and thought that he was going to beat the cancer. I drove back to New Hampshire with the family to see him the next Friday. We had the chance to talk which we had prayed for. It was such a blessing.
However by now (off of the chemo temporarily) the leukemia was totally uncontrolled and he needed 2 units of packed cells every other day and platelets every day. This became an unwinable battle even though he was slowly getting his muscle strength back but he remained very tired. The next and last drug in the cancer battle to try was Compath.
The oncologist told Dad the following Monday that the Compath was very strong medicine and that he was probably not strong enough to take it due to the side effects. He signed off the case that day. The oncologist nurse explained the situation to my father more fully the following morning. Dad made the decision with his wife, daughter and son present to accept hospice care with no anger or regrets. He made the decision calmly with remarkable courage.
He had attended his 50th wedding anniversay celebration three years before. He had witnessed his oldest granddaughter graduate from medical school. He had danced with her at her wedding. (Click the link to see a picture of her and my parents "Calling Finally"). He had seen another granddaughter and grandson graduate from High School. He had led a full, wonderful life.
Even though he had CLL for two years before becoming ill, he exemplified courage, love, and faithfullness to his wife of 53 years that we all admired. He was more concerned about her than his own health. He never complained even though we new how tired he was and we knew the ultimate end.
Dad was at peace with his life. He knew his destiny. He knew that he would soon be with his redeemer; that this life was but a fleeting moment in time; that death had no sting for those who know their God. He met the last adversity head-on like every other problem I had seen him encounter.
That afternoon at 1:00 pm he was loaded onto an ambulance. I followed him with my family to a brand new hospice facility about 15 miles away. We spent about an hour after arrival getting Dad settled in his new surroundings which he told us was very nice.
Dad talked to us about what he wanted at his funeral, the songs we would sing, and who he would give his model airplanes to(radio controlled) that he had built over his 78 year life span. He was the lead instructor of the RC Aces airplane club which he belonged to for many years. (When I was a boy, he flew me from our home town in Washington to another town about 30 miles away one Saturday afternoon to pick up potato chips. He had been a mechanic in the air force before getting married and had obtained a pilot's license after leaving the service).
He told us that he wanted his funeral to be a celebation of his life and not a "dirge". He insisted to my sister that she get a notepad and pen to make sure that nothing was forgotten.
I left at 3:00 pm that Tuesday for Pennsylvania knowing that I would probably never see him alive again.
My wife called around noon, three days later while I was working at the hospital to tell me that he was now free.
He will be sorely missed by all who knew him.
The measure of a man is not only how he lived but how he faces death. Dad exhibited courage, love, and faithfullness to the end.
"Precious in the sight of the Lord is the death of his saints" Psalm 116:15.
"For the grace of God that bringth salvation hath appeared to all men, Teaching us that, denying ungodliness and worldly lusts, we should live soberly, righteously, and godly, in the present world; Looking for that blessed hope, and the glorious appearing of the great God and our Savior Jesus Christ; Who gave himself for us, that he might redeem us from all iniquity, and purify unto himself a peculiar people, zealous of good works." Titus 2: 11-15.
"Let not your heart be troubled: ye believe in God, believe also in me. In my father's house are many mansions: if it were not so I would have told you. And if I go and prepare a place for you, I will come again, and receive you unto myself; that where I am, there you may be also. And whither I go ye know, and the way ye know." John 14:1-4 KJV. ("You know the way to the place where I am going") NIV.
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