I sat on an unfamiliar bench under a sky turning dark. I was surrounded by trees I didn’t know. On my right loomed a massive hospital whose halls I never conceived needing to walk. I sat, choking on the words. They stuck in my throat; maybe if I didn’t say them it all wouldn’t be true. I forced them out anyhow.
“I just don’t want her to die.”
A painfully long–yet unsettlingly quick–few days later, a diagnosis entered our lives, forever to be seared into our daughter’s future. Stage IV, high-risk neuroblastoma. Cancer. Our precious, longed-for and adored 14 month old daughter Jade had a destructive beast growing inside her, spreading and overtaking her healthy body. It began in her left adrenal gland, spiraling into a large tumor that curled around her aorta. It hungrily took up residence in her large bones and orbital bones. Unsatisfied, it infiltrated her bone marrow. Her doctors wouldn’t give us statistics, but I couldn’t stop myself from looking them up. At the state she was diagnosed in, Jade had a 30 percent chance of surviving five or more years. All of the things I had hoped and prayed for her, and things I didn’t even know I had hoped for her, came falling down around us, shattering as they hit rock bottom with me as we learned about her treatment plan and what it would do to Jade’s body. Not just throughout her treatment, but also what it could do long term.
How do we, as parents, face the thought of only another five years with our babies being a gift? Throughout Jade’s 14 month treatment, I discovered that some days were faced head-on. We walked into those days with strength and confidence that we were all, Jade included, going to make it through this. Some days I only made it through the day five minutes at a time. If I could just do the next five minutes with Jade, then I could think about the next five, but no further. Cancer is like this: one day you feel like it can be beat and the next you are wondering if the treatment is worse than the disease your child is fighting. The choices a “cancer parent” faces are horrible vs. horrendous. It does something unexplainably cruel to a parent’s psyche to have to agree to put poison through your child’s veins and irradiate their body in the hopes that it will keep them alive. It is a new type of torture watching the child you swore to protect at all costs, in deep pain and suffering knowing you signed the papers that consented to the treatment that is putting them in such pain. And yet, it is all done because you swore to love, protect and save them at all costs. There were so many moments when I wanted so desperately to steal away the suffering Jade was experiencing. I would have taken it, tenfold, if only I could relieve her of it.
I was challenged repeatedly to learn so many things as a cancer patient’s parent. I learned how intense the caregiver’s role is. I learned how to care for Jade’s central line which was used for chemotherapy, blood draws, IV antibiotics and anesthesia. I learned how to care for and change the dressing, which must be kept sterile, that covered the central line entrance area on her chest. I learned how to manage feedings through her ng tube and how to replace her ng tube, which is a temporary feeding tube that Jade had for well over a year because she felt too sick to eat for much of the time. I often felt as if eating became foreign and uninteresting to her. Sometimes it seemed as if I was halfway towards earning my own nursing degree by the time Jade was through treatment.
I understood so much necessary medical terminology during Jade’s treatment, but discovered this was some of the least valuable information that I gained from being her primary caregiver. I learned of the vast wealth of power and strength the human body and soul have to experience pain and suffering, yet persevere through it. I was given a chance to see into my daughter’s emerging personality and glimpse the fighting spirit within her that said, “I will not die.” One amazing quality that Jade’s doctors and nurses would point out, was her determination to smile and enjoy at least five minutes of each day. There were very few days during Jade’s time at the hospital, when she would be in the thick of treatment and at her lowest, that she would not get out of bed to color, explore or play for at least a short while. I believe this spark within Jade is what kept her moving forward and kept her alive.
I also experienced tremendous personal growth. Facing this devastation made me look at God, full on, and decide where I chose to stand with Him. My choice was to never ask why; where could that possibly get me? My choice was not to be angry and blame God. I chose to dig deep, to discover what could it possibly mean to have joy despite being in your lowest state. My husband and I, together with our family, friends and community that rallied around us, prayed for healing; immediate and miraculous healing. We pleaded with God to give Jade longevity of life, strength and perseverance. Along the way though I discovered that for me, the miracle wasn’t that Jade was instantly healed, it was that I allowed God to miraculously change my heart in the most difficult time I have ever faced. I allowed Him to take something ugly and turn it into beautiful.
This beauty was fully putting all my faith & trust in the ultimate giver of love, God. It was experiencing and living out joy in the midst of adversity and pain. It was community rallying around our family as we were weak and hurting. There were many days I felt lonely and isolated but I can see now how agape love was demonstrated as people continually showed up to stand with us through the entire war. This is the power of presence. There is nothing that contends with the power of someone just being there for another in the midst of suffering. Adversity will come, but when we invite God and others into our pain, it is then that true love is expressed and experienced.
In honor of Childhood Cancer Awareness Month, we would like to highlight the following organizations that Nicole Marr supports:
Nicole Marr lives in northwest Montana with her husband and three children. She works as a hair stylist by day and amateur blogger by night. You can find her sharing about life with honesty and authenticity at neongreylife.