I am a mother of three wonderful children. My youngest daughter, Soleil is two and a half years old and is fighting brain cancer for the second time. Soleil’s name means sun and it is the most fitting name for her. She is a light, a joy, and perfection. Soleil has an ear for rhythm and music and loves to sing. When a good song comes on, Soleil brings out her dance moves. She has the cutest hip sway and shoulder shrug! Soleil has the determination and ambition that third kids tend to have. She was a full-time crawler at 5 months old. Soleil was pulling up and “couch surfing” at almost 8 months old. We knew it was only a matter of time until she walked on her own. In April 2020, Soleil started falling. She could no longer crawl or walk along with the furniture. We took her to her pediatrician, and they didn’t find the change in her behavior concerning. After several weeks of visits to the pediatrician; a stay in the hospital; countless phone calls with medical professionals; and concerning symptoms - I could not take their response of “it’s a stomach bug” as an answer.
We persisted. In June of 2020, Soleil finally received a proper diagnosis. Brain cancer. Soleil’s brain tumor consumed most of the space in her brain. So much so, that when they finally did the CT scan, she was in the operating room to release the fluid in her brain 2 hours later.
She had a successful full resection and underwent six months of aggressive chemotherapy and three stem cell transplants. We celebrated Soleil ringing the cancer-free bell in January 2021! Soleil was monitored by sedated MRIs every three months following her last cycle of chemotherapy. She maintained the status of cancer-free until February 2022. One year and one week from the day she rang the cancer-free bell. Soleil had her second successful full tumor resection. Cancer spread to her spine and treatment looks different this time around as a result. She is currently receiving chemotherapy 6 days a month. After her second cycle of chemotherapy, there is no evidence of disease (NED), which is a huge cause for celebration! The chemotherapy is working!
ON FIGHTING THE FIGHT
The ability to recognize joy and normalcy in everyday life is important when fighting and surviving the trenches of childhood cancer. Staying busy, positive, and optimistic is the only way. Seriously.
Once you go down the path of “what ifs” or the deep dive into the reality of the diagnosis, it is exponentially difficult to find your way out. A veteran pediatric oncology/hematology nurse once told me, “chemo is good.” Chemotherapy gets rid of cancer, which translates to our babies having the opportunity to thrive. Chemotherapy is good, even though the impact is harsh, the symptoms feel never-ending and the damage can be irreversible. Chemotherapy is good because it kills cancer. Finding a healthy balance between sharing information and answering questions takes time. Pediatric cancer is hard. It is traumatic and it can feel debilitating.
Give yourself grace. Know that you are not alone, even if your child is the “only one described” with the condition. Find your people. For me, it was my husband and my parents. Having a therapist is important as well. Processing requires professional support, and everyone directly impacted by the diagnosis would benefit from therapy. There is hope in healing! Several organizations pour into pediatric cancer families. Whether it be a special superhero costume from Chelsea’s Closet; an elaborately decorated room kit from Rock N’ Rooms; or an interactive craft from the Children’s Art Project. There are people that know the fight and will bring happiness and light to your journey. Lean into your support, your time to give back will come.
WHAT SHOULD OTHER MAMAS KNOW
As a mother and doula, I understand the importance of communicating personal needs and having them respected is critical to creating a positive medical experience. As parents, we know our children best. We know when something is outside of their normal and we know when something doesn’t feel right. Advocate for your child. Use your voice until you are heard. I am dedicated to mothering and my hope is to help empower others to follow their intuition and access their personal strengths. Your child’s life might just depend on it.
HOW CAN OTHER PEOPLE SUPPORT MAMAS/FAMILIES WHO ARE EXPERIENCING SOMETHING SIMILAR?
The majority of pediatric cancer is spontaneous and without cause. There are so many unknowns which is yet another layer for families to navigate. Please, be gentle and mindful when offering advice; especially advice that helped an adult with cancer. Advice often comes from a place of wishing to help, but can land upon the parent causing overwhelm, weight and sometimes undue harm. The advice communicates the sentiment that the parent hasn’t done enough to protect their child.
Pediatric cancer is vastly different than cancer in adults. In Soleil’s case, treatment is necessary. Soleil has had three brain surgeries including two brain tumor resections, several months of aggressive chemotherapy with 6 weeklong inpatient stays. Soleil has received three auto stem cell transplants. She has had more blood and platelet transfusions than I can keep count of. She eats mostly organic foods and was born at home safely and without complications. Her cancer still came back. Offering love, sharing a meal, asking about the child’s siblings, and checking in with how someone is doing before asking too many cancer-related questions is incredibly appreciated. Think and pause before you ask. Positivity can be shown through conversation and spending time together. Handwritten cards, texts with prayers, and a simple I love you can be just what the heart needs on hard days.