Meet Rachel McCallum, Survivor & Guest Blogger
Rachel McCallum is a long-term survivor diagnosed with Anaplastic Astrocytoma of the 4th ventricle of the brain stem in 1993. Her experience as a long-term survivor has encouraged her to become an advocate for others like herself who have struggled with the transition from pediatric patient to independent adulthood.
This is the first in a series of guest blog posts by Rachel.
“My mom had originally taken me to the doctor over concern for a crooked smile in my kindergarten photo...”
I’m a long-term pediatric brain tumor survivor and an aspiring social worker. One of the most important aspects of my burgeoning career is helping other pediatric cancer survivors transition into independent adulthood through whatever means I can. This includes advocacy, support, and individual consultation. I greatly appreciate the opportunity given to me by the Children’s Cancer Cause team to use this blog as a platform to tell my survivorship story. I’ll be telling my story in bits and pieces because there are a lot of often-overlooked points that I’d like to make sure policymakers and the general public are aware of.
Many childhood cancer stories are told by adult caregivers and focus merely on the survival of the child. For a long time the goal post was set at “5-year survival.” Fortunately, better treatments are being developed every day, producing more long-term survivors. However, too many children still end up dealing with after-effects of the treatment and the cancer itself for a lifetime. This is especially true for those surviving a childhood brain tumor, the second most common type of cancer in children.
Unfortunately, as long-term survival rates have increased, long-term survivorship care for adult survivors of pediatric cancers has failed to advance at the same pace. In addition, medical professionals are often not trained to take a holistic approach. Once a patient has hit that 5-year bench mark, they want to “cure” specific symptoms and diseases, and they don’t always take the patient’s quality of life into account. (I’ll get into more detail about this in later posts.)
For now, let me tell you how my survivorship story begins…
It was a cold, rainy day in February 1993. I was going in for my first (and to this day I’m hoping my last) brain surgery. As you can imagine, it was a nerve-wracking experience for a kindergartener, not to mention my parents — with my two-year-old sister in tow and another child on the way.
My mom had originally taken me to the doctor over concern for a crooked smile in my kindergarten photo. I don’t remember much about that hospital stay except that I made it through surgery like a champ and was back home within a week. I do recall an annoying nurse who kept waking me up to see if I wanted more pain meds (although that might have been my dad’s memory since he stayed with me after surgery). Once I’d recovered, I went through radiation treatment for about 6 weeks and finished chemo some time around my seventh birthday.
I was adamant about sticking to kindergarten classes with my peers rather than holing up in special housing near the hospital. We were living in Anaheim in Orange County at the time, but the specialists for radiation and such were up in Los Angeles. Anyone familiar with traffic in Southern California will understand why we estimate car travel by time rather than distance. (Remember, Waze didn’t exist in the 90’s!) Luckily, my pediatric oncologist and surgeon were located in Anaheim — though even that drive across town could be painful depending on the time of day.
Fortunately, trips to the hospital for MRIs became less and less frequent over time. They started every month, then every 3 months, every 4 months, every 6 months, and then just once a year. Eventually - sometime during high school or community college - I was simply told to “go get an MRI at the emergency room if I had any weird symptoms all of a sudden.”
Much of my adult life has been spent searching for a better answer than that, which is more or less what this blog series will be about. It may sound strange, but I almost miss the days when I was under pediatric oncology care.
Everyone loves my pediatric oncologist, affectionately nicknamed Dr. Ruki by patients and families, because her Indian surname is too difficult to pronounce for many of her pediatric cancer patients. Dr. Ruki always made sure I was up to date on my shots and referred me to an endocrinologist when it looked like I wasn’t growing or going through puberty normally. The endocrinologist had me self-administering growth hormone shots every night for several years around age 11. Friends and family thought it was amazing that I could do it myself, with my mom acting mostly as an observer.
Unfortunately, Dr. Ruki and all the other specialists I saw when I was a kid have since retired and I’ve been left to fend for myself as a long-term adult survivor.
Along this journey I have connected with many people and organizations in search of where I “fit in,” attempting to find “my tribe.” It’s been difficult. The only thing I can be sure of at this point is that my journey - and the journey of every other pediatric cancer survivor - is extremely unique.
There are certain things we can all agree on, like the need for better follow-up care and a smoother transition from specialty pediatric care to regular care under adult primary care physicians. Other issues are unique to individuals based on specific cancer type, anatomical and geographic location, treatment, age at diagnosis, and other factors, including health equity issues related to race, gender and economic status.
As I’ve learned and matured, I have realized that - although I struggle - when taking my relative privilege into consideration, I have much to be thankful for, and I hope I do not come off as unappreciative of the experiences and relationships I’ve had along the way.