Whether your “child” is 5, 15, or 25, hearing that he or she has a brain tumor changes your world forever. From that moment on, nothing will ever be the same.
In mid-January 2005, our 13-year old son started to complain of a recurrent headache that, inside of a week, became incapacitating. Three visits to the pediatrician and one MRI later, he was diagnosed with a rare, malignant tumor – a pineal mixed germ cell tumor – that sometimes appears in adolescents. By the end of the following week, Matthew had begun a year-long course of treatment that would ultimately include two shunt surgeries, initial chemotherapy, salvage chemotherapy, major brain surgery, proton beam radiation, and back-to-back rounds of high-dose chemotherapy with stem cell rescue.
The prognosis, while hopeful at first, grew dimmer as each successive treatment option failed, but our son inexplicably defied the odds and survived with minimal collateral damage. Unlike so many fellow childhood brain tumor survivors, he was able to finish high school and succeed in college. These days, he’s a typical young adult starting out in the work world, excited to shape his life.
Ten years post-diagnosis, I give thanks every day for my son’s survival. I also consider it a miracle that the rest of us – my husband, an older daughter, a younger son, and myself – survived intact and as a family. So, this is the best advice I can pass along, both from our experience and from what I have learned from other families:
- Make a pact with your child to be honest. From the beginning, we told our 13-year old we would not hide the truth from him. We needed to trust each other, and we needed to work together. Whatever we needed to face, we would do so honestly. That doesn’t mean we burdened him with every detail of his treatment, but we never hid the seriousness of his illness from him. I believe we are closer today because of this.
- Make sure your child is under the care of a team that is knowledgeable and experienced in that particular type of cancer. Patients are often diagnosed at a local community hospital. In the throes of a diagnosis, it can then feel difficult to switch to a different oncologist or hospital that is located further away, but it’s important to be under the best possible care, especially when dealing with a cancer that is rare or challenging. Also know that, at any point in the process, you can request a second opinion from an outside expert — especially down the road, when key decisions are being made.
- Before treatment starts, regardless of your child’s age, ask to have a meeting with a fertility counselor. As a profession, oncologists are getting better at taking future reproductive concerns seriously because this issue has received so much attention in recent years, yet too many young patients still report that fertility preservation options were not presented prior to their starting treatment.
- Play the role of patient advocate (assuming your child allows you to do so). I had never been someone to challenge authority, but once Matthew was diagnosed, all that changed. I became a “Mama Bear,” 100% focused on saving my child’s life. I built up the courage to ask for a different attending physician, demand second opinions, and challenge decisions that were being made. I took on the role of patient advocate – and, time and again, this led to better care.
- Take charge of record-keeping. I assembled a loose-leaf notebook with sections for a daily log, bloodwork, imaging reports, discharge notes, and questions. As the weeks of treatment dragged on and the paperwork accumulated, this consolidated resource became invaluable.
- During and after treatment, explore the wealth of resources out there. We are fortunate to live at a time when we have easy access to a vast number of organizations that address the needs of cancer patients and their families. Just to name a few: there are organizations that specialize in connecting cancer patients by age group and others that focus on cancer type; organizations that sponsor camp experiences and ones that offer college scholarships; organizations that help fly patients to their treatment and others that help underwrite the cost of care. There are also a great many online support groups for patients, caregivers and even siblings. Take advantage of these wonderful resources! There is something really powerful about connecting with others whose lives have been similarly interrupted by cancer. After graduating from high school, Matthew was fortunate enough to connect with a program that offers one-week kayaking programs for young adult cancer survivors. Connecting with other young adult survivors, he says, is what finally helped him to move forward.
- While your child is in treatment, accept help from others. Websites like Lotsahelpinghands make it easy for people to sign up to assist with cooking, driving, house cleaning, etc., without having to coordinate with you directly. People want to help. Let them.
- Be good to yourself. Figure out what you can do to relieve stress – whether it’s exercise, or a bath, or a walk, or meditation, or a massage – and program it into your calendar. Simplify your life, as much as possible; let go of nonessential matters. Try not to worry about what will happen in the long run; focus on getting through one day at a time. Our mantra was a quip that supposedly came from Winston Churchill: “If you’re going through hell, keep going.”
- Realize that everyone in the family is going to be vulnerable for some time. Like a strong earthquake, a cancer diagnosis produces aftershocks. Research studies show that spouses, siblings, grandparents, even close friends, can be seriously knocked off their life course. Be mindful of everyone’s emotional and physical fragility, and encourage them to seek support, whether it’s talking to a hospital social worker, seeking outside counseling, practicing meditation, or starting a yoga practice. Medication to help promote sleep, relieve anxiety, or address depression can be important, too.
When a child is diagnosed with cancer, it’s beyond devastating. There’s so much we can’t control, but also some things we can. Throughout Matthew’s treatment, I kept trying to think backwards: Was I doing everything I could possibly do to ensure the best possible outcome? Was there anything I wasn’t doing that I might regret later on? This became my yardstick, giving me the strength to take on tasks and challenges that were not in my nature.
Looking back at that time, I can see how our family was incredibly lucky: We had good health insurance and received excellent care. I was able to stop working and devote myself to my son’s care and rehabilitation. He faced his illness with courage and resilience. Friends and family were generous with their support. Somehow, we made it through that time. I wish everyone the same good fortune.
Prior to her son’s diagnosis, Jaime had a career in communications consulting and marketing research. Since 2007, she has devoted much of her time to volunteering, fundraising, writing and lobbying on behalf of various childhood/adolescent cancer and brain tumor organizations. She founded and continues to moderate an active online group for parents of children diagnosed with central nervous system germ cell tumors. Jaime and her husband make their home in the Washington, DC, area.