I’ve been quite reluctant to share my last essay for my English Composition course. As a class, we read The Absolutely True Diary of a Part-Time Indian by Sherman Alexie, which was our inspiration for an Absolutely True Diary of (something in our lives). This is not a creative writing class, so our essays had to have a thesis, three supporting points, a refutation and cited academic sources. We were to write about something personal in our lives that was also social. My life is filled with the personal and social, but many are too broad to refine into a six page essay. Early on in my essay process, fellow 46 Momma Bekah, suggested the topic of Bald Momma.
Even my topic was too broad for me to feel satisfaction in what I produced. This essay barely scratches the surface behind my choice to be a Bald Momma. The academic sources were hard to find, too. As a childhood cancer community, we rely on each other and childhood cancer foundations to cull the various sources of information/statistics from published articles into concise tid-bits of easily conveyed sound bites. This essay did earn an A, but there is plenty of room for improvement.
Without further ado –
The Absolutely True Diary of a Bald Momma
February 2009 I was rudely introduced to the world of childhood cancer when my youngest, Gregory, was diagnosed with Leukemia. This diagnosis, ever so gently given to us by Gregory’s oncologist, thrust me into a world I never would have taken the time to contemplate. Having a child diagnosed with cancer is truly trial-by-fire. Treatment begins immediately. Central lines are placed, blood product transfusions commence and protocols, called road maps, are implemented. Among this chaos and devastation, we parents are drawn to the internet, like flies to honey, searching for statistics, prognosis and support. With this information and connections to other parents of children with cancer, comes a bleak reality. We quickly learn how outdated the available information is, how harmful treatment is for survivors and how hard it is to connect with families in a similar situation. For a large number of us an internal switch is thrown. As we face the chaotic reality of having no control of the disease raging through our child’s body, we grasp for what we do have control over. At break-neck speed we learn how to be childhood cancer advocates. We seek out the foundations that are in alignment with our goals for childhood cancer, join their ranks and start shouting from our newly acquired childhood cancer advocacy soap boxes. If you were to know what we know, survive what we are surviving, connected like we connect, and lived to tell about it, you would get yourself a soap box, too.
By September 2009 I had found my soap box. At this time a group of fellow Momcologists, as some of us refer to ourselves, started forming a group called, 46 Mommas Shave For The Brave. Gregory was barely 100 days post a bone marrow transplant at this time and I was not in a place to become involved. Yet, I knew this was the advocacy group for me. I came on board in October 2010, just after 46 Mommas Shave For The Brave had held their first advocacy and fundraising event. Every year since then, this group of moms to kids diagnosed with cancer from all across the United States and Canada, gathers in one location and we shave our heads bald in solidarity with our children. Throughout the year and at this event, we fundraise for childhood cancer research. We are partnered with St Baldrick’s Foundation, the largest private funder of childhood cancer research. Their signature events are volunteers shaving their heads. Hence, St Baldrick’s. Yes, you read that correctly. I shave my head bald for childhood cancer research. That is how passionate we are about raising funds for life-saving childhood cancer research. Our passion is fueled by the realities of our own children and the lack of funding for childhood cancer research.
Lack of research funding becomes glaringly evident when trying to find current data pertaining to childhood cancer incidence and mortality. The National Cancer Institute has a division dedicated to culling these statistics: The Surveillance, Epidemiology, and End Results (SEER) Program. Sounds promising, doesn’t it? The most recent information SEER has made available to the public was published in 1999. With data reported between 1975 and 1995. “The overall decline in mortality was nearly 40 percent between 1975 and 1995, a statistically significant decrease of 2.6 percent per year. The overall incidence increased 0.8 percent per year. There were 2,275 cancer deaths among children in 1995.“ (Reis et al. 1) This data, at the later end of this duration, is nearly 20 years old. How can we begin to channel our collective efforts if we don’t even have current data to work with? We do it anyway. With the goal that we will have current data, in partnership with privately funded foundations. There is one bit of information in this quote that jumps off the page and hits me in the heart. During the reported time frame, incidence of childhood cancer increased. While today we still have nearly 20 year old data to work with. I shiver to consider the increase in incidence with current data. Christine Eiser, Richard Eiser and Veronica Greco vaguely address more recent data in a 2002 research study published in Pediatric Rehabilitation, “Although survival in childhood cancer has improved significantly in recent years, cancer remains a potentially life-threatening illness….” (215). Reporting dated and veiled information does nothing to help those that fund childhood cancer research realize the need to fund research. Which results in advocates like myself and 46 Mommas sharing our personal stories in a grassroots effort to raise those precious research dollars. We take time away from our families and our kids, seeking assistance from the general population. The stories we share of our kids survival and life post childhood cancer leaves people breathless. Without current data, there is no reason to believe that anyone would know what life looks like for these kids.
When Gregory was diagnosed I had no idea what life after diagnosis would look like for him. On the surface he looks like any other seven year old, he appears to be thriving and enjoying life. Despite the fact that his treatment history predicts a challenging future for him as he ages. Before treatment can begin there is the arduous task of signing consent forms. These consent forms itemize all the side effects that each particular treatment protocol is known for. It’s been over four years since I signed my name to the bottom of those forms that ominously outlined the potential destruction to my child’s body, treatment aimed to rid his body of cancer yet, leaving behind a hefty price tag for survival. Pediatric oncologists at Yale and Memorial Sloan-Kettering Cancer Center collaborated on a study reporting on the late effects from cancer treatment administered to our kids. “Nonetheless, survivors of pediatric and young adult cancer face a substantial risk of late effects and early mortality; by 30 years from their initial diagnosis, 73% of pediatric cancer survivors will develop at least one chronic physical health condition, whereas in 42% the conditions will be severe, life-threatening, disabling or result in death.” (Spain et al. 196) This is the reality that hits the hardest. Standard treatment for children diagnosed with cancer, designed to kill cancer, is toxic to the rest of our children’s body. Chemotherapy and radiation have devastating consequences when used to save our children’s lives from certain death by cancer. But it gets worse. My son’s only treatment option for a chance at survival was a bone marrow transplant. The Blood Journal, a prominent source for all things related to the blood, published a report specifically addressing the late effects that bone marrow transplant patients face. “…patients had a markedly increased risk of developing a severe/life-threatening complication across nearly all organ systems, with the greatest risk observed for subsequent malignant neoplasms, followed by endocrinopathy and musculoskeletal impairment.” (Armenian et al. 1418) We hang all our hopes on the chemotherapy and radiation that will save our children. In our consent forms we learn that they also cause cancer. If we were not so desperate to save our child’s lives during that moment, we would be dropping our pens and seek out the closest soap box. I cannot be silent. It needs to be shouted to the world that what we use to treat cancer causes cancer, life-long chronic health conditions and death. Shaving my head bald is a cakewalk in comparison to what our children endure in order to survive. Once I found a bit of breathing room my soap box became a constant companion, along with my network of fellow parents. Advocating for childhood cancer research cannot be done solo.
Through our efforts to obtain information we find ourselves creating a rich and diverse support system. 46 Mommas not only grew from the desire to fund research for less toxic therapies for childhood cancer but, the need to be emotionally supported through this life-changing experience. In an article from Pediatric Rehabilitation the motivation to connect is clearly stated, “For most parents, seeing their child in such distress, combined with their inability to help the child, is a highly stressful situation, and it is not surprising that parents experience increases in anxiety, depression, uncertainty and loneliness.” (Eiser et al. 215) This support system that came from having shared experiences and mutual passions helps to ameliorate the fear, sadness, unknowns and isolation that comes with having a child diagnosed with cancer. When our children are in treatment and if they survive, we face a daily life shadowed by fear. This fear does drive our advocacy work yet, as human beings we still need to function in the real world. 46 Mommas has offered me a readily available network of friends to help me navigate the myriad of thoughts and emotions that bubble up to the surface. I know that at a moment’s notice I can call on them to help me access resources, mobilize action or simply a friendly presence to help spread the burden of life lived with a child diagnosed with cancer. This networking of moms is not a new occurrence. Psychology refers to it as a stress response called tend-and-befriend. “Women more often respond to stress by nurturing and banding together for support (Taylor et al, 2000)” (Myers. 399) When I ran across this categorization in my Psychology textbook, of my own behavior, I was pleased to see that this was a normal response to stress-inducing situations. Not only is 46 Mommas a life-long support system for me, we are a powerful group of passionate and dedicated women. Margaret Mead sums it up best in her well known quote, “Never doubt that a small group of thoughtful, committed citizens can change the world; indeed it’s the only thing that ever has.” During dark moments and days when we feel like we just are not getting anywhere with advocacy and fundraising, this quote finds it’s way to our consciousness. We know that as a group we are powerful. Together we strengthen our spirits in order to face and accomplish the work we are passionate about. Shaving our heads bald is the culmination of that power.
Yet why go bald when survival statistics are so high? There are two statistics that get thrown around the childhood cancer community. In a study reported by the Journal of the National Cancer Institute, “Population-based statistics show the probability of a 5-year survival of cancer in those under the age of 20 in the United States to be 80%.” (Yasui et al. 1368) There is no argument in that statistic. Survival is the goal of childhood cancer treatment. I will not disrespect you if you chose not to advocate based on that statistic. I will ask you to consider it in another light. 80% survival translates into one in five deaths. Within five years of diagnosis. When it comes to children, I don’t consider the standard 5-year survival benchmark to have any meaning. Eeking out five years of survival post a diagnosis of cancer to a three year old? A life lived for eight years is not a full life lived. It is so very easy to see that big 80% figure and exhale a sigh of relief. When considering survival statistics for anyone diagnosed with cancer we need to engage our critical thinking skills and look at the data from every angle. Ask the question: How do these numbers translate to real life situations? This critical thinking is the basis of my advocacy for childhood cancer research. The brain beneath my bald noggin is furiously taking in and processing the reality of having a child diagnosed with cancer and it’s effects.
My reality is that I have learned, I have survived and I am supported. Along with an occasional bald head. The helplessness still looms large in moments of darkness. Gregory is surviving, in this moment. Through research and relationships I know that his current health status is not guaranteed. My action against those fears is to advocate for him and kids not yet diagnosed. I proudly wear my bald head as a beacon of hope for the future. A future where we have access to current information. A future where our kids will not merely eek out a survival but, live long and healthy lives. A future where 46 Mommas Shave For The Brave exists because we are sharing the communal joy of our children’s success through treatment. A future where moms like me don’t shave their heads out of desperation. We 46 Mommas have a mantra. It resonates so deeply that I have had it tattooed on the back of my neck. “Hair grows back. Kids don’t.” Shaving our heads is not about the hair or how we will look bald. It’s about saving and preserving the lives of our most precious resource. Our irreplaceable children.
Eiser, Christine, J. Richard Eiser, and Veronica Greco. “Parenting A Child With Cancer: Promotion And Prevention-Focused Parenting.”Pediatric Rehabilitation 5.4 (2002): 215-221. Academic Search Complete. Web. 6 June 2013.
David G Myers. Exploring Psychology. Holland: Worth Publishers, 2011. Print.
LAG Ries, Smith MA, Gurney JG, Linet M, Tamra T, Young JL, Bunin GR (eds). Cancer Incidence and Survival among Children and Adolescents: United States SEER Program 1975-1995, National Cancer Institute, SEER Program. NIH Pub. No. 99-4649. Bethesda, MD, 1999.
Emily S. Tonorezos, et al. “Response To A Treatment Summary And Care Plan Among Adult Survivors Of Pediatric And Young Adult Cancer.” Journal Of Oncology Practice 8.3 (2012): 196-202. Academic Search Complete. Web. 6 June 2013.
Yutaka Yasui, et al. “Cause-Specific Late Mortality Among 5-Year Survivors Of Childhood Cancer: The Childhood Cancer Survivor Study.” JNCI: Journal Of The National Cancer Institute 100.19 (2008): 1368-1379. Academic Search Complete. Web. 13 June 2013.
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Finch, Mindi. Stored Memories. 2009-2013. Cortex and Cerebellum. The Brain.
. www.StBaldricks.org. St Baldrick’s Foundation, 2013. Web. 4 June 2013