“When other families were beginning the fight to save their child’s life, we were walked out of the hospital and told to make memories,” remembers Jaime King.
Two years ago, King’s daughter Katherine was just 6 years old, and had just been diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG); a tumor on her brainstem. With a zero percent survival rate and zero treatment options available, Katherine — who had gone from running a fever and stumbling at school — was now told that she had a mere five days to five weeks to live, if she even made it out of the hospital alive.
Looking back now, King says she was immediately thrust into survival mode:
“I went into autopilot,” King tells Babble. “I remember thinking, ‘this is 2015, what do you mean there is literally nothing that you can do for my daughter?’ I wanted to fight for her — with her — but how does that work when her chances of survival are zero? There was nothing I could do except be the best mom that I could be for her, even if that meant comforting her through the end. And if I was going to help her through it, then I needed to know what she was going to endure. Would she suffer? Would she starve? Would her lungs give out?”
But as King soon learned, there was no one to teach her.
“Katherine was [in] hospice, but the only experience the staff had was with older patients,” she tells Babble. “Other DIPG families would talk about the struggle, but then there would be a vanishing period, before they reappeared again with a funeral posting, and it was upsetting! If no one was researching this cancer, and no one was talking about these childhood deaths, how would people know what was happening? I didn’t know that this type of thing was going on, and I was sure that millions of other people didn’t know either. I decided then that I was going to share this secret with the world; show them what we were going through. Allow them to see my child, love my child, and then watch her die. Saying it [out loud] sounds so blunt and inhumane, but until people know what the reality of this cancer is, children will continue to suffer in silence.”
With that, King launched the Facebook page Katherine the Brave, and began to document her daughter’s life, as well as her journey towards death. With each post, King poured out her grief, heartache, and desperation for a cure, and allowed the world to see what Katherine was going through in a way that made it impossible to ignore.
“I shared everything, because Katherine deserved to have people fight for her, and the next child deserves to have people fight for them,” says King. “She would want her DIPG friends to have a chance.”
According to The Cure Childhood Cancer Foundation website:
“Research and development for new drugs from pharmaceutical companies comprises 60 percent of funding for adult cancer drugs and close to zero for childhood cancers. However, the NCI spends 96 percent of its budget on adult cancers and only 4 percent of its budget on children’s cancers.”
To put it in perspective, pediatric brain cancer — which kills the most children each year — gets less than 1 percent of that funding. One percent.
On paper, Katherine sadly became one of those statistics — though in reality, she was so much more than that. According to her mother, Katherine was an old soul; and not just the kind of child that seems inquisitive and wise beyond her years, but the kind that could see into the soul of everyone around her. The youngest child in a family with two grown sisters, her presence forced her busy family to slow down their ways and enjoy their time with her.
“She struggled with anything negative, and always wanted everyone around her to be happy and comforted,” remembers King. “Even in the end, when she had lost the ability to speak and was nothing more than skin and bones, I’d hold her close to me, wrap her frail arms around me, and she would gently pat my back. Here she was dying, and she was using all her strength to comfort me.”
Almost exactly one year to the day of her diagnosis, Katherine passed away. And in keeping her promise of showing the reality of DIPG cancer, the world watched as Katherine was dressed in her princess gown, a tiara was placed on her head, and she was laid upon the cremation table where her family would see her for the very last time.
It’s been nine months since Katherine left this world, but King is still determined to keep her alive in the legacy that she leaves behind.
She tells Babble:
“People see these stories, and they think, oh that was an unlucky one. No, they were not just unlucky, they were diagnosed with a cancer that there is no funding for. There is no profit in funding research for it, because it’s so deadly. You see all these fundraiser and charity walks for pediatric cancer, but the reality is that the money goes towards things like Leukemia, and not towards anything deemed incurable; but [the reason] there is no cure [is] because there is no funding for one. I begged, pleaded and groveled for something to save my daughter, and there was just simply nothing there.”
Katherine would have turned 8 on February 26, but this year her family blew out her candles without her. Although King had originally planned a large celebration, the pain of her absence proved to be too much. So instead, in an intimate gathering, the family she loved, remembered her on the birthday she should have had.
“She deserved to be here,” says King. “She deserved better than a 0% chance.”