Guest Spot: Childhood Cancer: A month of awareness is not enough

Four years ago, at 8 years old, our granddaughter, Leah, was diagnosed with acute lymphoblastic leukemia, a highly treatable cancer with a high success rate for a complete cure. Biopsies determined the cancer was limited to Leah’s bone marrow.

During our time spent with Leah at her home in Delaware, I often had to tell myself: I’m not with a child who’s dying, I’m with a child who’s struggling. A horrid struggle for so many reasons, including chemo treatments, steroids, pain, nausea, spinal taps, a PICC (peripherally inserted central catheterization) line (replaced by a port in her chest) and hair loss.

Shortly after her diagnosis, Leah asked a medical person on her team if she’d be losing her hair. At such a young age, I was surprised she was aware of that possibility. I was reminded that the year before, she grew her hair much longer than usual. Her goal was to donate to a group that makes wigs for kids who have lost their hair due to cancer treatments. We’ve got great pictures of her the day she donated 12 inches of her gorgeous hair.

Childhood cancer is devastating for the whole family. A parent may have no choice but to leave a job to be with their homebound child, causing financial hardship. Even the family car can become a source of stress, since it’s often needed to get to medical appointments. And if something happens and it needs repair, the child’s treatment schedule is at risk of being interrupted.

Siblings and other young relatives may not put into words their worries. In Leah’s case her brother, an empathic little guy, often cried if he saw his sister in pain. Whatever feelings her cousins might have been dealing with, they outwardly showed loving support.

The federal funding cuts by the Trump administration to universities mean research projects are disrupted. And we lose scientists. These losses may take decades to gain back, if ever.

Guns are the number one cause of our children in America dying, but the number one disease that takes their lives is cancer. Anyone with a speck of empathy and decency would be disturbed by those facts. I’d like to think no one needs to see a loved one struggle through cancer to be sickened over cuts to cancer research.

After two-and-a-half years of treatment and four surgeries, Leah, now 12, is cancer-free. She enjoys an active life: drama club, school government, playing viola and tennis, and preparing for her Bat Mitzvah in December.

For our country to be dismissive about the care of our most vulnerable is un-American, at least the America I’ve known before now. It’s also inhumane. We do not have the health and well-being of our children as a priority. Diminishing cancer research is yet another example of glaring cruelty and warped values.

If only we had political leadership as strong in character, smart and caring as Leah and so many of our country’s children.

Laurel resident Mary Ellen Tomaszewski has self-published two books of memoir essays, the most recent titled ‘Savoring Time.’