Tiny, but fierce

Layla Simpson with her mom, Amanda, while 
Layla was a patient of Angela Hospice’s My 
donor-supported program helps children 
to receive expert care for terminal illnesses, 
while remaining in the comfort of home, with 
family and loved ones to support them.
by Dana Casadei

If Layla Simpson cries and it sounds different than usual, her mom, Amanda, wonders if Layla will be alive the next day.

“I know that sounds dramatic but it’s kind of where we are at,” Amanda said.

After you learn about Layla, who was born with a very rare birth defect called an encephalocele and is an Angela Hospice patient, it doesn’t sound so dramatic anymore.

The 20-week ultrasound is where the Simpsons’ emotional roller-coaster began. That ultrasound, also known as the anatomy scan, is where many parents often get the first glimpse of their child, and photos of their profile to take home. Amanda and her husband, Mike, were only given pictures of Layla’s feet.

“I remember telling my husband that I was kind of irritated that the ultrasound tech hadn’t been chattier,” Amanda said.

After the ultrasound they went to meet with their doctor, thinking it would be a regular follow-up. He told them he wanted Amanda to see a specialist and they were recommended to Google “encephalocele” to learn more about it. The doctor didn’t have any information packets on it. So once in the parking lot they immediately went to Google.

“If you do happen to look up her condition it’s all very terrible,” Amanda said. “It rocked our world.”

Soon after that ultrasound, Amanda called the specialist to make an appointment, but there weren’t any openings for three weeks. This would be one of the many moments where Amanda would fight for her baby.

While on the phone with the doctor’s office, Amanda told them she couldn’t wait three weeks to find out what was wrong with Layla. An appointment was made for the following day instead, and the many doctors’ appointments began.

“Every time I would have a doctor’s appointment I would be scared that they wouldn’t hear the heartbeat anymore,” Amanda said. “I never walked away from another doctor’s appointment feeling like, ‘Oh wow, that was really cool.’

“I don’t even know how we made it,” she continued.

Luckily, Amanda and Mike had each other, a strong support system, their faith, and a few really wonderful doctors, some better than others.

Dr. Nadia Tremonti
Amanda said the first doctor they saw basically told them not to expect anything good out of the pregnancy. They quickly switched to a different doctor at Children’s Hospital of Michigan, where they would meet Angela Hospice Pediatric Medical Director, Dr. Nadia Tremonti, who recommended Angela Hospice for Layla.

“Hospice is a very scary word for people who don’t know everything about it,” said Amanda, whose only previous hospice experience had been with her grandparents. She didn’t know anyone that used hospice as a service for a child.

Once at Children’s Hospital they met with three doctors and two OBs to go over all of her scans. This was where a plan for palliative care was put into place. At first, one of the doctors recommended she not have a C-section, but Amanda felt strongly about doing it because of how large Layla’s encephalocele was.

“I thought, ‘If she makes it to birth, why wouldn’t I take that extra step?’” Amanda said.

Amanda and Mike then had to make another hard decision: what did they want to do to prolong Layla’s life? Did they want her on machines? If so, how long? Amanda and Mike told the doctors they wanted to do whatever they could to help Layla breathe so they could say goodbye to her. The same doctor who didn’t want to do the C-section told them that could be traumatic for Layla, but Amanda and Mike stayed strong. When Layla was born she didn’t need any breathing machines or respirators; she came out kicking and screaming.

“I stayed strong and I’m so glad I did that because here we are,” Amanda said holding Layla, who at the time of our interview had just turned 12 weeks old and was making tons of noise. She also had on a pink shirt with a Shakespeare quote from A Midsummer’s Night Dream that couldn’t have been more appropriate: “And though she be but little, she is fierce.”

Two days after Layla was born she had surgery to remove the encephalocele, which took quite a bit of Layla’s brain. Amanda said they don’t know what functions that part of her brain held but they knew that her stem, which controls her breathing and heartbeat, was still intact. For now, they wait to see what happens. Layla can eat from a bottle but will she be able to feed herself someday? Will she be able to chew? Or walk? They don’t know.

“She’s obviously a miracle and a big blessing to us, but that’s probably the hardest part: there’s no idea what’s going to happen,” said Amanda, a self-described “planner.” “We’re not completely out of the woods.”

Now they have an Angela Hospice nurse and social worker that come to the house, and Layla is re-evaluated every 90 days by her doctor. Amanda said they probably won’t be able to take her off hospice until she’s at least a year old.

“I don’t quite understand everything about it,” Amanda said. “I don’t really get how she can be doing so well but we still talk about her passing.”

That unknown is also why they didn’t have a baby shower. And why Layla doesn’t really have a nursery. They hadn’t put money away for a crib because they didn’t think Layla would make it this long, and they didn’t want to have a nursery without a baby. She sleeps in a swing they have set up in the front room and all of her clothes are in two plastic dressers. But for now, Amanda and Mike will take every day they have with her, and cherish every second of it.

“You hear this (kind of) news and think, ‘Why me?’” Amanda said. “Now that she’s here I know why us. Because we can handle it, even though sometimes it feels like we’re not going to be able to. It’s really hard, but she’s here and she’s a miracle.”

Since the time of this interview, Layla’s condition stabilized and she was able to sign off of hospice care. She’s now pursuing treatment under the care of her physician. 

While it is not uncommon for patients to see some improvement in their condition once they begin hospice care, in 2016, about 5-percent of Angela Hospice patients actually improved or stabilized enough that they “graduated” from hospice care are were no longer hospice appropriate.

As You Wish: Personalizing Advance Care Planning

Communication is a good thing. But what happens if you become unable to express your own wishes and beliefs? Making your end-of-life preferences known in advance can help ensure your wishes are heard even if your voice isn’t. And it’s simpler than you may think.

Join us for a free, three-part series. Through expert insight, you’ll learn what to consider, how to plan ahead and make your wishes known, and come away with a legal document you can share with your family and healthcare providers.

Presenters include the region's leading experts in ethics, senior care, home care, palliative care and hospice.

As You Wish: Personalizing Advance Care Planning
Wednesdays, April 26 through May 10
7 to 8:30 p.m.
At St. Mary Mercy Livonia
North Auditorium
36475 Five Mile Road, Livonia 48154
Register for this free series here
For more information, call (734) 655-8943.

Riding on Faith

Jodi Eiseman’s boyfriend told her he’d bring her bike inside the house
when she got too sick to ride it. It’s a favorite napping spot now for
Jodi’s cat, Love Potion. See more photos at the end of this article.
Jodi Eiseman has some things she wants to get off her chest. She’s about to turn 49, and she knows she won’t see 50. So she wants to tell her story. It’s one of faith, perseverance, and love – with a dose of humor too.

Faith has always been what helped Jodi through. Before she was even old enough for kindergarten, as a scared little girl she saw a statue of the Blessed Mother start to glow. Mary brought Jodi comfort, and had a message of peace for her – even if it was a little lost on a mesmerized child.

“At that age, you’re looking at Mary and going, ‘But you’re glowing. I hope you know that,’” Jodi remembered.

But that has been the story of her life ever since: when she was scared, when she felt unloved or unsupported, and even now as cancer tries to take over her body, faith has given her strength.

Twelve years ago Jodi survived stage 3B uterine cancer. She was one of 50 patients to receive an experimental treatment – and she was the only one to survive. During that first bout with cancer, she had an out-of-body experience, but she knew it wasn’t quite her time.

“I still had the feeling that I hadn’t done what I’m supposed to do yet,” Jodi said.

Then one night, when she really thought she might die, she felt God grab hold of her.

“God came to me very strongly, but gently…and said, ‘Jodi, why are you hanging onto this cancer so bad? Just let go. I got it…Let me help you and you will get through this,’” she recalled.

And she did get through it. A few days later, her doctors found no trace of cancer.

But even then, it wasn’t easy for Jodi. Her husband told her if she got sick again he didn’t want to take care of her. And when they divorced, she didn’t get much sympathy from her parents. Still, Jodi persevered. She worked, she went to school at night, and she set goals for herself.

“What Jodi has told me is that if you don’t give up hope, then lots of things can happen,” said Jodi’s boyfriend Greg. They met four years ago at a motorcycle show where Jodi was showing her custom Harley. He takes inspiration from her determined spirit; the fact that she never gives up. He recounted what she told him about that first battle with cancer:

“She laid there, getting through her pain – she dreamed of riding a motorcycle. Never had ridden one before...didn’t know how to ride a motorcycle,” he said.

But when Jodi got better, she went and bought herself that Harley. She had it custom painted in exquisite detail with scenes from The Wizard of Oz: Glinda the Good Witch on one side, and the Wicked Witch of the West on the other.

“I had men come up and say, ‘I was scared of that green witch,’ and I’m like, ‘Well, guess which one I am?” Jodi said.

Then two years ago Jodi found out she had cancer for the second time. She had gotten into a car accident when another driver was texting and rear-ended her. When Jodi went to the hospital to get checked out, the doctors found colon cancer. And this time, she knows the cancer is not going away.

“I planned on robbing a bank naked and then saying, ‘Oh yeah, put me away for life. You’re gonna really have fun doing that,’” she said.

But Jodi didn’t rob a bank. She moved to Michigan to live with Greg after she got sick, and now he’s her caregiver. His devotion is one of the ways she sees God working in her life, even as she battles cancer.

“Just how things happened, how I met [Greg]. I wasn’t looking for anyone at all. I thought it was crazy, talking to some guy I’ve never known,” Jodi said. “Look at him, he’s handsome. But stuff like that’s usually married, or got millions of kids.

“I’m not quite sure why he stays,” she continued. “He’s not married to me, he’s not obligated. He says, ‘I’m not that type of guy.’ There’s a lot of people out there who wouldn’t care about their ‘guy-ness,’ they would just turn and leave and say, ‘You know, you don’t have much life left in you. Bye.’”

At that point Greg interjected: “Maybe it’s more important how your heart feels than it is how your ‘guy-ness’ feels,” he said. “She doesn’t quite get the grasp of somebody loving her and wanting to do something for her because that’s what they want to do – because they love her. It’s that simple. I didn’t have to sit down and think about what I wanted to do. But then again, I don’t know that she’s ever had that in her life.”

In October 2016, Jodi decided to stop her chemo treatments. It was a decision she made on her own.

“I took the holiday off so I felt like I could have energy for the holiday, and I decided that it wasn’t worth me going back and putting myself through that,” Jodi said.

(Jodi loves Christmas. It was the happiest time for her growing up, when her parents’ arguments would stop, and her grandfather would dress up like Santa. She hasn’t taken her Christmas tree down in two years. It’s decked out in exquisite cloisonné ornaments, carefully chosen and thoughtfully arranged on the lighted tree.)

These days Jodi receives home care services from Angela Hospice. And she continues to keenly experience her spiritual connection.

“Everybody has had a spiritual experience: it’s the time you were born,” Jodi said. “It’s the same way when you die, except you know a heck of a lot more.”

Jodi says she’s given herself over to God’s will. She’s seen Jesus recently in dreams. And she can really identify with Job: his struggles, his reliance on God, and God’s faithfulness to him.

“To see the reward at the end for believing…” she said, “it can really happen.”

Like Job, Jodi has gone through a series of real struggles in life. But she’s remained faithful, and she knows God is still with her, and she knows He has a plan for her.

She remembers back when she was living in Ohio, when she was alone battling her cancer, she became overwhelmed and started to cry as she was praying.

“I said, ‘Just send this huge angel please. And he has to be big,” she said.

And then, Jodi points at Greg. “There he is.”

And that is one of the sweetest insights Jodi has to offer, a lesson learned through a life of struggle. As she stands next to her big angel, a little weak, but full of conviction, she delivers her message, “Make sure you tell them that real love is out there.”

Jodi getting her makeup done before her photo shoot.
Jodi and Greg at home, with loved ones looking on.
Jodi's custom painted Harley.

Jodi with Angela Hospice staffers, following her photo shoot.