Helena Mantovani Bottós

Child Health | 8 months ago

A Mother's Letter: The Raw Reality of Having a Child with Cancer

Helena is only 6 years old, but she’s already fought harder than most do in a lifetime. Helena has neuroblastoma, a rare pediatric cancer. Her mom writes a heartfelt letter about the raw reality of having a daughter with cancer.

Editor's note: Dr. Juliana Mantovani Bottós is the mom to Helena, age 6. Helen has neuroblastoma, a rare pediatric cancer that primarily affects young children. They live in Brazil, but routinely come to Atrium Health Levine Children’s for care from Dr. Giselle Sholler and the Isabella Santos Foundation Rare & Solid Tumor Program. Below, in her words, are her emotions about the raw realities of having a child with cancer but also how she gets through every day with a positive outlook. 

It was June 2019. Suddenly our daughter started to limp. I'll never forget that day. Helena was soon diagnosed with high-risk metastatic neuroblastoma. 

Having a cancer in someone very close to you is devastating. But such an aggressive cancer in your child who is only four years old is the greatest pain we can ever feel. Everything changes in a minute. And this minute is like a film in your memory that repeats in your dreams. She is my miracle, my smile, my love, my heartbeat. She was also the biggest pain I have ever felt, my tears hidden in the bathroom, my strongest prayers.

The ground under your feet just collapses.

But if the diagnosis has taken the ground away, how about learning to fly?

Helena Mantovani BottósAfter suffering deep pain and a dismal prognosis, you realize that there is no other option but to be STRONG. You learn to put your fears in a back pocket and hide it very well. You learn that the impossible is only something more difficult and time-consuming than normal. You learn to turn the duel into a fight, the treatment into challenges. We leave all our life behind in Brazil and crossed the ocean bringing with us only the essential: our lovely daughter and faith in a new clinical trial, the hope for many neuroblastoma families.

Force is not something that magically appears, but it is achieved at great cost. It comes from the brightness of your child's eyes, from many losses along the way, from the ability to be reborn from the ashes.

You learn to look at the good at all times. Negative thoughts are already gone along with your fears in the back pocket. And you learn to value what really matters, what is not seen with the eyes, but is felt with the heart.

When you have to face something like that, you realize what really matters. To hold your child and not know if she will wake up the next day is an indescribable pain. We strengthen the importance of our faith. Hope is the air we breathe. Gratitude is the noblest feeling. Life is a daily gift.

You realize that pain also hides some beauty. You can find generosity and donation of love, time and solidarity. You learn that laughter of a child with cancer is the best sound.  

To all of you who believe that love also heals. That the smile is a very effective medicine. That solidarity strengthens our soul. That the cure for childhood cancer is somewhere, we must not stop looking for it. We must continue to search, to improve the medicine for a better future.

Thank you from all my heart.