A month after turning 9, I did not feel well. I had been getting sicker and sicker for weeks. I was always an active child and rarely got sick, but my ear pain and fever would not go away. My parents were worried, and, as I had a large family, all of my siblings were wondering what was wrong. None of us considered cancer, but by the next day, I was diagnosed, and all of our lives changed forever.
My nose would not stop bleeding, and I bruised from just slight touches. I had freckly dots that kept multiplying on my skin. My doctor thought it was still a bad ear infection and gave me a shot of an antibiotic in my butt. By the next morning, I could not sit down because the shot gave me a huge bruise. We knew it was serious, and the doctor said to come to the emergency room immediately. They drew blood, and that was when things got scary. The medical team stopped talking to me as a kid and only spoke with my mom in hushed tones that I tried to overhear. I could tell it was serious. We were sent for a consult with a hematologist/oncologist, Dr. Elna Phelan. I had the first of many bone marrow aspirations to definitively determine whether it was leukemia or something else.
If you are unfamiliar with a bone marrow aspiration test, I will briefly explain that there are few things more painful. I delivered two beautiful baby boys in adulthood without anesthesia and that did not come close to the level of pain of each bone marrow aspiration test. At the time I was in treatment, the patient remained awake for the duration of the procedure, which typically took about five minutes. I was told this was because they could not risk the impact on brain function for repeatedly providing anesthesia to a child. I was told not to move as this may cause additional injury. My doctor said scream as loud as you want but do not move.
After some local anesthesia was applied to my hip, needles were driven into the bone to inject some more anesthesia. It stung and burned in my hip, and I could hear the crunch as the needles pierced the bone. I cried out in pain over and over. I am not sure Dr. Phelan realized how loud I could yell when she gave me the advice, but I took full advantage. Then, a large needle was inserted into my hip. I could feel the pressure of the doctor’s weight pushing the needle into my hip. A needle was then inserted inside the other needle, and marrow was pulled out. I could hear the doctor grunt as she had to push the needles into my hip. I could hear the crunch when it moved. I was terrified throughout, wondering if I would die. Then the final bite of pain came as it felt like my body would break apart when the large needle was pulled out. Even after the test, I was terrified of what the test would say. Did I have cancer? In the back of my mind, even at 9 years old, I knew it was not going to be good news. A few hours later, I was admitted to the hospital with acute myeloid leukemia (AML).
As I felt this pain over and over during the three years of treatment and three years of follow-up, it never got easier. I dreaded each test and wished for a way to leave my body. A pediatric psychologist who visited me in the hospital taught me self-hypnosis to manage pain during the test. The breathing helped, but it never took away the terror or the pain.
I was fortunate to have been connected with Dr. Phelan, a pediatric hematologist/oncologist who was on the cutting edge of treatment and the psychosocial impact of illness on kids. From the start, she brought me into the room for the difficult discussions and told me what was going on and why. She told my parents how important it was for me to be a “normal” kid even as I had three years of chemotherapy and three years of follow-up ahead. For the next three years, I had chemotherapy every three weeks alternating between a daily outpatient course for a week and then an inpatient course for four days. I was enrolled in a clinical trial for the course of therapy I received. I was an avid soccer player since the age of 6, and Dr. Phelan insisted that continuing this was important. She even signed me out of the hospital for furloughs during inpatient chemo courses so that I could go to games. My mom was with me at every doctor’s visit and hospital stay as much as she could. Early on in my treatment, hospitals—even children’s hospitals—did not allow overnight guests in the room. So, my mom could not stay. About six months into my three years of treatment, this changed, and my mom stayed with me for the remainder of my inpatient chemotherapy stays.
As a kid, I did not understand the strength it took to be there with me through all of the pain and difficult treatments, but I knew I was safe because she was there. As a parent myself now, I cannot imagine the pain she must have felt in not being able to fix it for me. My five sisters and one brother all did what they could to help me through, and only recently as adults have we started talking more about how this event impacted all of our lives and how we see the world. I know for me, surviving a deadly cancer diagnosed so early in life has given me a focus that I want to get things done and make a positive impact on the world. At first, I thought I wanted to be a nurse, but I quickly realized that I do not like needles. I shifted to mental health and focusing on how to help reduce the incidence of trauma and help people deal with the impact of difficult experiences and trauma when they occur.
Trauma and other difficult experiences in our lives force us to open our minds to new possibilities. This can bring new growth or withdrawal. One factor that can influence whether a growth path is opened is the response from our environment and specifically those around us including family and friends. Having just one supportive person can make the difference between a crushing experience and a growth experience.
I shared this story as an illustration of how the reactions of those around someone going through a trauma or difficult experience can make a huge impact on how that person sees the world and their future. In addition, a difficult experience of one person can also be a difficult experience for another. The parent of a sick child is weathering a different storm than the child who is sick or the siblings, but all are weathering a personal storm. When I was a child with cancer, I never thought I was anything but a normal kid. I was a normal kid who had to get chemo. That sucked, but it would end, and I could look forward to being a normal person again. As a cancer survivor for more than 40 years, I am grateful for the medical care that saved my life and equally grateful for the people who supported me through the healing process, including family and friends. I am the person I am today because of these experiences.
Copyright Sheila A.M. Rauch, Ph.D.
References
Rauch, S. A. M., & Rothbaum, B. O. (2023). Making Meaning of Difficult Experiences: A Self-Guided Program. Oxford University Press. https://doi.org/10.1093/med-psych/9780197642573.001.0001
Social Support Feeds Resilience When Faced With Trauma
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04.01.2024
A month after turning 9, I did not feel well. I had been getting sicker and sicker for weeks. I was always an active child and rarely got sick, but my ear pain and fever would not go away. My parents were worried, and, as I had a large family, all of my siblings were wondering what was wrong. None of us considered cancer, but by the next day, I was diagnosed, and all of our lives changed forever.
My nose would not stop bleeding, and I bruised from just slight touches. I had freckly dots that kept multiplying on my skin. My doctor thought it was still a bad ear infection and gave me a shot of an antibiotic in my butt. By the next morning, I could not sit down because the shot gave me a huge bruise. We knew it was serious, and the doctor said to come to the emergency room immediately. They drew blood, and that was when things got scary. The medical team stopped talking to me as a kid and only spoke with my mom in hushed tones that I tried to overhear. I could tell it was serious. We were sent for a consult with a hematologist/oncologist, Dr. Elna Phelan. I had the first of many bone marrow aspirations to definitively determine whether it was leukemia or something else.
If you are unfamiliar with a bone marrow aspiration test, I will briefly explain that there are few things more painful. I delivered two beautiful baby boys in adulthood without anesthesia and that did not come close to the level of pain of each bone marrow aspiration test. At the time I was in treatment, the patient remained awake for the duration of the procedure, which typically took about five minutes. I was told this was because they could not risk the impact on brain function for repeatedly providing anesthesia to a child. I was told not to move as this may cause additional injury. My doctor........
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