There’s no guidebook for parents when they find out their child is dying. Every decision carries the weight of the world. Every day could be the last.
“Your head starts spinning and everything starts going in a million different directions,” Lisa Amato said of the moment she learned her daughter, Kate, had stage four cancer.
Kate was just nine years old at the time.
IN THE DARK
“Not only did she have tumors in her shoulders, both shoulders, one in her foot, but her lungs were riddled with tumors as well,” Lisa said.
Her first task after learning of the diagnosis seemed insurmountable. She needed to call her husband, Jeff, who was at home caring for their son, Jack.
“I was sitting against a wall on the floor holding my knees, bracing myself for telling my husband that Kate has cancer,” Lisa said.
The Amato’s were given the option to go into hospice right away, but the immediately declined. Looking back, Jeff and Lisa thought it was quitting when they wanted to fight.
Kate went through treatment for more than two years but in the end, nothing worked. Kate’s health was declining.
“Intellectually I knew what was happening,” Lisa said. “I know what’s happening. But your heart doesn’t want to accept it.”
In November 2016, Jeff and Lisa were getting ready to take Kate back to the hospital.
“I said ‘Daddy and I just talked, I think we should take you to the hospital, we’re worried,’” Lisa said. “And [Kate] started crying. And begging. And pleading. ‘No mommy, don’t take me back. I’m done, don’t take me back.’”
Jeff Amato remembers exactly how long Kate fought. “Two years, four months, ten days.”
But it was time. The Amato’s called Community PedsCare; hospice.
TURNING ON THE LIGHT
A team from Community PedsCare, the pediatric division of Community Hospice and Palliative Care, immediately responded to the Amato’s home.
The care team knew exactly what to do and went to work making cate comfortable, taking care of Jack and Caroline and prepare the family for Kate’s passing.
PHOTOS: Remembering Kate Amato and the Hospice workers who helped her family
“It was like someone turning on a light in a dark room,” Lisa said.
With the help from PedsCare, the Amato’s were able to devote themselves to Kate.
“I didn’t get to see, personally, this active, vivacious, smiling kid running around, I did get to see it with the picture that hey painted for me so beautifully,” Judy Sparks, a nurse with Community Hospice, said.
“When people think about hospice and think about what we do that there’s such a thought of ‘a child is dying,’” Tiffany Mitchell, a child life specialist for Community PedsCare, said. “But for us, it’s so not the mindset when you walk into this house. It’s how can I bring laughter, how can I bring peace, how can I take any fear away?”
“Memory making” is one way to take away the fear. The night after Kate said she didn’t want to go back to the hospital, she was surrounded by her closest girlfriends. They giggled, gossiped and made tangible memories that would last long after Kate was gone.
“The memory that I have of all of these girls laughing and loving each other, for one last time together, is a beautiful memory,” Lisa said.
Just two days later, Kate passed away as Lisa and Jeff cheered her on to heaven. Judy was at Kate’s bedside. Tiffany was playing Jenga with Caroline. All was calm.
“To give a family comfort and kindness during those moments is one of the more beautiful gifts I think any person can give another person,” Lisa said.
She and Jeff only wished they had called Community PedsCare sooner. At the time they didn’t realize the services go far beyond the end of life support.
“I think there’s an association with hospice that you’re throwing in the towel," Jeff said. "And that’s all they do is end of life services. And there’s so much more that they do that we could have taken advantage.”
“I’m at home managing two kids, one with special needs, I could have gotten some help there," he continued.
As for the Judy’s and Tiffany’s of the world, it’s not easy to bond with the families in hospice care knowing the ultimate outcome. It’s a job most of us couldn’t do, but they love kids so much they can’t imagine doing anything else.
“Sometimes afterward when you’re driving home I’ve had to pull over and stop [and think] ‘Wow, what did I just do?’” Judy said. “And then you just…you do it again. And it’s okay.”
“The night that Kate died, Lisa said ‘There’s nothing perfect about death. But what you guys did helped give Kate the perfect death,’” Tiffany said. “And I told Lisa that when I get a call and I know I’m going somewhere, I’m in my car usually and I breathe and I pray and I think about things like that. Because that’s why I do what I do.”
To learn more about Community PedsCare and the services they provide, click here.
For more on Kate Amato’s life and legacy, click here.
To follow the #TeamKate Facebook page, click here.