What do you say at your own funeral?
For Miriam Sawka, it’s not a trick question. The 17-year-old planned and hosted what she dubbed her FUNeral on Nov. 3 at the Salvation Army in Eagle Creek.
Miriam is still very much alive, but doctors at Riley Hospital for Children have told her she has maybe five or six weeks left before her young body gives out against the cancer she’s been fighting since she was 12 years old.
Ewing sarcoma is a rare cancer that typically occurs in bones or in the soft tissue around bones. It most often strikes the young. In Miriam’s case, the cancer started in one leg but since has spread to the tissue around her left lung. Whenever surgeons removed one tumor, more followed.
When the cancer returned for the third time, Miriam was done. She’d had enough of chemo, surgery and hospitals.
It’s not that she wants to die.
She just wants to live until it’s time to die.
And that’s what Riley’s palliative care team has helped her do. Their charge is to take care of children and families facing medically complex, often life-threatening, life-limiting diseases. Their focus is on helping patients live well.
Nurse practitioner Amy Hatton has been by Miriam’s side since she met the teen in February, shortly after Miriam learned the cancer was back. To Miriam, she’s been a friend and an advocate.
Hatton marvels at the 17-year-old’s maturity as she makes decisions about her medical care and her last wishes with the full support of her family.
“She is wise beyond her years, and yet she’s such a teenager. She has this wicked sense of humor, and she’s funny and whimsical and likes things that are silly,” Hatton said.
“To see this beautiful soul … to know her life is shortened beyond what it should be and to be able to be funny and also make decisions about her life … the grace with which she’s handled that is pretty spectacular.”
Miriam is definitely a bit of an old soul. “I’ve had two hip replacements and I have varicose veins,” she joked. “I love to watch Hallmark movies and crochet. That’s not 17, that’s 71.”
Regardless of her age, Miriam exhibits a gentle grace when she speaks to family and friends gathered for her FUNeral, a celebration of life with the emphasis on fun.
“I don’t really like funerals,” she said. “I think it’s unnecessary how sad they are.”
So in that spirit, Miriam joked that she wanted to plan “a party to die for.” And she did. There was a mountain of food for guests, as well as music and games. There was lots of laughter and, yes, there were a few tears. There was a slide show put together by Miriam’s younger sister set to the song “Angel by Your Side.” There was a photo booth for silly pictures, and there was a graduation.
Miriam, who withdrew from Carmel High School last month after beginning her senior year, donned a cap and gown and received her diploma from Carmel-Clay Schools Superintendent Michael Beresford.
In her remarks to the crowd, Miriam said she didn’t want to talk about her cancer. “I’ve been through hell and back multiple times, but my life is about so much more.”
It’s about her parents, Dan and Stephanie, Salvation Army ministers who have supported her decisions throughout this journey. It’s about her sisters, Bailey and Elizabeth, who are there to laugh, to tease and to love, as only sisters can do. It’s about her faith and her friends.
Faith is what she’s leaning on now.
“I would love it if there was a magical cure,” she said, “but I cannot wait to get to heaven. I was not ready four years ago, I was not ready a month ago. I’m ready now.”
There are no curative measures available to her now, only agonizing treatments that might extend her life by weeks or months. Miriam’s parents have allowed her, in consultation with doctors, including Riley oncologist Dr. Kyle Jackson, to make decisions about terminating care. They supported her wish to have a living funeral.
Not that it was easy. For Stephanie, the idea of planning her daughter’s funeral was too much to grasp. But when Miriam suggested she think of it as a graduation party, “that allowed me the freedom in my mind to make that shift. Instead of planning my daughter’s funeral, I’m planning a party to celebrate my daughter.”
There are still a lot of tears behind the scenes as the family works through the grief, Stephanie Sawka said. The FUNeral, though, gave Miriam the chance to say the things she needed to say and to hear the things others needed to say to her.
“I regret every time I yelled when I could have said, ‘I love you,’ Miriam told the people gathered at her service. “I regret every time I slammed a door when I could have given a hug.”
This was her day to give hugs and love to all who have meant so much to her.
People like Hatton, whose care and support as a palliative care nurse have helped Miriam live the life she can for now.
“Part of our mission is to make sure the things we’re doing are things that meet your goals for your life,” Hatton said. “We’re focusing on quality of life. She had a matter of months left, and she didn’t want to spend them in the hospital.”
The FUNeral is consistent with who Miriam is, Hatton said. “She’s owned all this, as hard as it is. She’s funny and smiley, but she has tears too. She deeply understands all of this. Her desire to have a celebration of her life while she can celebrate is beautiful.”
The palliative care team has worked to manage her symptoms and improve her mobility so she can do the things she wants to do, like volunteering at her church’s trunk or treat night at Halloween.
That’s a big deal to Miriam, who is adamant that she doesn’t want to curl up in a bed and die.
Like every young teen, Miriam had dreams. First, she wanted to be a cupcake baker with her best friend. Then she considered going into psychology or becoming a child life specialist or an oncologist.
Now, she said, “I’m just hoping to make it to Christmas.”
Christmas is coming early to the Sawka household. They will celebrate it at Thanksgiving, along with the birthdays of Miriam’s two sisters.
“I’ve made my peace with everything,” Miriam said. “I believe I’ll be going to a better place.”
Her parents’ faith allows them to believe that too, but it doesn’t take away the pain of losing their child.
As Salvation Army pastors, the couple has walked this journey many times with others. “We just never expected to walk it with our own child,” Stephanie said. “I try not to look down the road because I become a hot mess very quickly.
“We have her today, and we’re going to celebrate.”
-- By IU Health senior journalist Maureen Gilmer
Email: firstname.lastname@example.org, Twitter: @MaureenCGilmer