Life Threatening Illness: Can you live with it?

Abstract

This paper is a personal reflection on facing death while living with a life threatening illness. While there are many ages of persons who can be affected by illnesses, when a child is affected it brings many stages of grief while accepting what you are faced with. Systems are in place that are available for those affected and if utilized can prove to be a blessing in what feels like a time where feels as if they are being cursed.

Life Threatening Illnesses and Living with It

This paper will hopefully give you a firsthand encounter of how a life threatening illness can affect not only the immediate victim of the illness, but the family and the friends of the victim as well. Life threatening illnesses, specifically Cancer in this instance creates an immediate crisis in the life of each family member. Normal daily life comes to a halt, parents will miss work or feel forced to quit their jobs, siblings might need to be cared for by relatives or neighbors and the ill child becomes the major focus of family time and attention. All other concerns that might have been before the diagnosis is put on hold and parents will have to make tough decisions and become their strongest ever at the weakest of moments.

Life is taken for Granted Sometimes My cousin Amy was a beautiful red-headed, blue eyed sixteen year old straight A student, junior at Lakeland High School in Suffolk, VA and a dedicated field hockey player for going on 3 years. Just like the previous years, my aunt and my cousin were headed to the doctor for her physical so she could begin the season. As they pull up the doctor, my aunt drops her off and says that she is going to run to Dollar General right next door but for Amy to go ahead and sign in and she would be right back. It wasn’t anything new for them; it was just a physical, right? Sadly, little did my aunt and cousin know on that beautiful 75 degree Virginia Beach morning their skies would soon turn black and their lives would no longer be anything they ever knew again.
Learning of the Illness When Amy was seen by the doctor and as he was performing her routine physical he noticed bruising on her legs, arms and some pinpoint spots under where she had fallen and cut herself. Amy only had a minor complaint of her bones hurting on occasion as well. She justified the pain to the doctor that she thought it was just the conditioning for field hockey because like other physical sports, it can take a toll on one’s body so she just kept a Tylenol routine and carried on about normal day to day activity. The doctor said that he wanted to run some blood tests and he would call with the results. He did not sign off on her physical form to play, so Amy of course felt a little disgruntled and angry. My aunt and Amy returned home and waited for the phone call, Amy’s anticipation to go to practice was raising and began eating at her and she just wanted the doctor to call. The next day the doctor called and asked if my cousin, aunt and uncle would come back in the office that same day for the results. This call of course sent them into a state of panic as they rushed to the doctor. As soon as they arrived, the nurse brought all three of them back to the doctor’s office, where they sat waiting for the doctor to meet with them. DeSpelder and Strickland state that “Communicating the diagnosis is a crucial event in patient care. How this is done can influence a patient’s attitude toward the illness, response to treatment, and the ability to cope.” (Strickland, p185) The doctor walked into the room and passively explained that Amy’s blood had too many white blood cells and with those words, he handed them all information on Acute lymphoblastic leukemia (ALL) which is a type of cancer that causes the body to make too many white blood cells (lymphocytes). These lymphocytes, called leukemia cells, cannot fight infection very well but with more testing, because the cancer is known to develop so quickly, it would probably turn into Acute lymphocytic leukemia. When leukemia builds in the blood and bone marrow, there is little room for healthy blood cells which causes infections, anemia and easy bleeding. Bruising and bone pain is another common side effect of this type of leukemia. The Reaction I will never forget the call that my granny received that afternoon. She answered the phone as she always did; only 2 seconds later she begins to scream “What Sybil, what is wrong, I can’t understand you!!!!” My uncle gets on the phone with my granny and then you just hear the words “NO, NO, NO, NO, Dear Jesus why have you done this to this little girl and our family? WHY WHY WHY???” Weisman describes a coping process called middle knowledge which is where individuals seek a balance between sustaining hope and acknowledging the reality. The first question asked was if Amy was going to die. As harsh as that seemed, it is a common question amongst many parents who just learned that their child has a life threatening illness. Among all the other stress, after the diagnosis, life begins to spiral faster and faster with little room to breathe, sort of speak. The lives of the ill child, her family and friends begin to feel like an emotional roller coaster. In the first days and weeks parents after the diagnosis, parents will be asked to sign consent for treatment forms and make important choices about what is right for their child. My aunt found this incredibly difficult often stating that she didn’t want to make the wrong decision for Amy and what would happen if she did and Amy’s illness grew worse. Shock, disbelief, fear, guilt, sadness, anxiety, and anger are what the American Cancer Society believes is a common parent reaction to cancer diagnosis. While no one is ever prepared to hear that their child has a life-threatening illness a sense of numbness may overwhelm them but there is always someone and services out there to help. I remember my aunt had this friend who was a social worker, once Robin found out about Amy’s diagnosis; she ran straight to my aunt’s side and brought information for days it seemed. She began to meet with Sybil twice a week, showed up at the hospital once treatment began and was there to help Sybil understand what was really going on as she has seen this many times before and is emotionally unattached, which helped in a huge way. Sybil had questions about Chemo, Robin was there. She would relay information to Sybil who could then update the family on what was going on. Social Workers are just one of the many people out there to help parents of a ill child. I was at the hospital one evening visiting Amy and I remember Sybil telling my granny that Amy getting sick was her fault. She hadn’t lived a perfect life, she had made mistakes and she honestly believed that this was karma coming back to haunt her. She swore that Amy being ill was 100% her fault and did through Amy’s whole treatment. I recall hearing Sybil crying and apologize to Amy multiple times, especially before treatments. This overwhelming sense of guilt never goes away and I still see my aunt cry from time to time recalling what she calls “Hell for almost two years”. Treatment Treatment options are not guaranteed to work, but many are available for someone in case one does not work and some doctors believe that a combination treatment therapy would be beneficial. The type of leukemia Amy had was Acute which means it needed to be treated right away. Chemotherapy was her first option, this treatment uses strong drugs to attack and destroy leukemia cells. Although many methods of delivering Chemo, Amy received hers through a catheter that was placed in her chest; her doctors said that this was the most common and hopefully most effective way for treatment. Chemotherapy has many side effects and it seemed Amy was hit with all of them, each treatment made her violently ill, she was never hungry and had to be bribed into eating sometimes, her hair completely fell out and she would grow these sores on her lips that were hideous to look at. I know when I would go visit her at the hospital it was heartbreaking to see her in this state. After the doctor saw that maybe the Chemo was not enough, he began to discuss radiation with my family. Radiation uses high-energy rays to kill leukemia cells. Amy would receive treatment every day for two or three weeks and then given a vacation from this treatment. Yes, I called it a vacation because this was the time that Amy was at her most normal state which I enjoyed. Radiation seemed to drain her physically which of course is completely understandable. After what seemed like forever, Amy’s treatment was looking good however, her bone marrow stem cells were damaged and the only hope to repair them was for her to receive a bone marrow transplant. During this procedure the doctors hoped the bone marrow would help regenerate a new immune system that would fight the residual leukemia that was not killed by the chemo and radiation. Although I am not confident in the exact type of bone marrow transplant Amy received, my family was given a whole team of helpers who would help us through this process. This team of helpers was a God sent, honestly. Amongst the many helpers was Robin, the social worker who stayed by my family throughout this whole process. After Amy’s last radiation treatment, my family was introduced to the Make-a-Wish Foundation. This foundation is a non-profit organization that grants wishes to children with life threatening illnesses in hopes to give hope, strength, and joy. Their motto states that “A wish come true helps children feel stronger, more energetic, more willing and able to battle their life-threatening medical conditions. For many, the wish marks a turning point in the fight against their illnesses. Doctors, nurses and other health professionals say, the wish experience works in concert with medicine to make their patients feel better emotionally and even physically. That is why wishes matter. That is why we grant wishes”. Well, their motto is 100% correct. Amy was asked if she could have one wish what it would be. Amy requested what she always wanted, horses again. Once Amy was diagnosed with ALL my aunt and uncle had to sell the three horses they had to help pay for the treatments, the stables began to fall apart, the fence began to wilt due to the weather and the lack of care once diagnosed. My family did not have time to care for things like that, their main focus was Amy. About six months of submitting her “wish”, Amy was on her way home from a check-up only to find a team of people fixing the stables and fencing. Amy did not know that the very next day, two horses would be delivered to her. The reaction on her face still to this day brings tears to my eyes. She walked outside, heard one of the horses neigh and she began to scream in excitement, ran down off of the porch and straight to the stables where the horses were waiting on her. One of the horses were already saddled up and ready to be ridden, Amy jumped on him, who she named Chance and rode all around the property, the biggest smile ever on her face. She could not believe her wish came true. Once Chance and Lucky were home, Amy’s spirits were lifted and two months later, the diagnosis that haunted our family, was placed at ease. Amy was told she was in remission. Remission according to the National Cancer Institute is “A decrease in or disappearance of signs and symptoms of cancer”. Exciting, huh? Definitely was, it was a blessing come true however, there are rules of this “remission”. Amy was told that she would be in remission her whole life, the leukemia could come back at any time but that the longer she went without a relapse, the chances became smaller and smaller that the cancer would return.

Conclusion Amy was diagnosed with leukemia at the young age of 16, endured so much over the next 3 years, things I could never imagine how she personally felt, I can only see the effects of living with a life-threatening illness causes on a family physically, emotionally, spiritually and financially. Total and complete exhaustion from running back and forth to the hospital, doctors appointments and the lack of sleep from constantly worrying about your child. I always heard the term emotionally unstable and although I never understood it completely, after the years of treatments, pain caused and suffering my aunt felt, I now understand and can relate to that term along with many others that reference emotions being completely out of control. When Amy was diagnosed, my family did blame God, why would he let something like this happen to a child? Why would he let something so ugly infect the body of someone who had so much going for her? Why God would let my family suffer which caused so much pain? Wasn’t God the healer and the almighty? Although after diagnosis, my family’s faith became weak, throughout her treatments, our faith grew stronger, we stopped asking why and just knew it was his will and we should not question him, but only believe in him that he will get us through this time and he did. When Amy was diagnosed, my aunt and uncle lived in Suffolk, Virginia, on a ranch, beautiful home, both had well paid occupations, they were living the life, sort of speak. Once this happened, my aunt quit her job, cutting their income almost in half but adding astronomical medical expenses. Once in remission, my aunt and uncle had to build themselves back up and it was not easy. I know that over time, they fell into over one hundred thousand dollars into debt and honestly they are still digging out of that and will continue to pay for the rest of their lives. Although Amy is now 36, healthy and has a 12 year old daughter that no one ever thought she would have because of the extreme chemo and radiation, I can say that I have an approach to life that is not of the norm. I appreciate life for what it is because at any moment it can be taken from you or can be interrupted with an illness that will cause damage that is never forgotten.

References DeSpelder, Lynne., Strickland, Albert. (2010). The Last Dance: Encountering Death and Dying. (9th ed.). New York, N.Y.: McGraw Hill.
Weisman, Avery (1972). On Dying and Denying: A Psychiatric Study of Terminality. New York: Behavioral Publications.