Today’s Mom Talk essay is a tough, but important one to read. While hospitals around the world fill up with more and more COVID-19 cases, there are other patients—many of them children—fighting for their lives from other illnesses. One of these children was Hunter Barr, a 4-year-old from Maine who lost his battle to brain cancer (diffuse intrinsic pontine glioma, also known as DIPG) in April of this year. His mother, Natalie Barr, who’s also raising a second son, Griffin, 3, shares her heartbreaking story in order to remind folks of the importance of wearing a mask and protecting the most vulnerable, and to spread awareness of DIPG and other childhood cancers. As she puts it, “Childhood cancers receive only 4% of the billions of dollars the government spends on cancer research each year, and DIPG receives an extremely small fraction of this because of its rarity. Sadly, this has led to virtually no progress made in research in over 50 years. The fate of Neil Armstrong’s daughter who died of DIPG in 1962 is the same as it was for Hunter.” At the end of her essay is a link to find out more about DIPG and to donate to research efforts.
The words still feel strange as I write them. We lost our son, Hunter to terminal cancer in April this year. He was only 4 ½ years old and was diagnosed with DIPG just after Thanksgiving of 2019. In under six months, our son was stolen from us. This deadly aggressive tumor robbed him of his ability to walk, talk, eat, and even smile within the first 2 weeks of diagnosis. Through various treatments and therapies, he was able to regain all his faculties before his body started failing again, but by the time his symptoms returned, his brain was too damaged. We had to put Hunter on a ventilator in the midst of nation-wide ventilator shortages and while he was able to come off it and breathe on his own, he never was able to gain any other function back. We came home from the hospital the final time on my husband’s 41st birthday. Eighteen days later, Hunter passed away.
All this happened while we were isolated from most of our family and friends due to COVID-19. We live close to my family, so we made a pod and allowed a few people to visit, including our 3-year-old son who was living with my parents while we cared for Hunter. But it wasn’t the same. I come from a big family and when Hunter was initially diagnosed, before the spread of COVID-19, family and friends encapsulated us. They flew in from across the country to support us as we lived our final Christmas with Hunter in the hospital. When COVID-19 hit, it was a cruel joke. We were being robbed again—this time of our support system.
In March and April, we had to take turns taking Hunter to his various specialist appointments and hid in our son’s ICU room because policies didn’t allow both parents to be there due to COVID-19. We went days without showering for fear of being ejected from the floor, never leaving our small room. Everyone did their best, but when you’re dealing with a terminal cancer diagnosis for your 4-year-old son, there’s no substitute for having the people who love you be close.
Multiple times during Hunter’s final hospital stay, I feared he would pass there and not get the opportunity for our family and his little brother to say goodbye. I didn’t hug a single person until the night Hunter passed for fear of exposing my family to the COVID-19 that surrounded me living in the hospital.
I was so angry, I still am, about the rhetoric happening in this country related to rights and mask-wearing. If you saw what I saw this past year, I guarantee that you’d wear a mask and be happy to be protecting all the cancer patients in the Jimmy Fund Clinic—the innocent children who wear masks every day because of their susceptibility to the common cold and germs that we take for granted our body has the ability to fight off.
The promising clinical trial my son was lined up to receive was delayed in part due to COVID-19. What if this trial was the cure? What if this was the chance we had, and we missed it because our country didn’t act quickly enough, pay attention sooner, care enough? Months later, the trial eventually started, but it wasn’t soon enough for us or our friend—the same week the trial started, our friend’s daughter, also with DIPG, was put in home hospice. All those months she could have been receiving treatments and she’s been robbed of that chance. We were robbed of the chance to fight. And then robbed of our children.
I share our story to remind people that the people dying as a result of COVID-19 are not all dying of the virus itself. They’re dying because of missed treatments, inadequate supplies during hospital says, and fear of leaving the house to get help when they need it. And some of those people dying are children. So, I plead, wear a mask. Remember Hunter. Be kind to each other.
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