Grinnell family, inspired by their late son, works to bring pediatric palliative care center to Iowa City

When it was time for 7-year-old Mason Sieck to start hospice care, there weren’t many options for him in Iowa.

Mason was diagnosed at age 2 with Gardner’s Syndrome, a rare disease that results in the growth of cancerous and non-cancerous desmoid tumors. Mason had 40 tumors throughout his body.

The Siecks, of Grinnell, had been traveling to the University of Minnesota for Mason’s treatment. And it was in Minneapolis where they found end-of-life care for Mason — and the rest of their family of five — at Crescent Cove Respite & Hospice Home for Kids.

Crescent Cove is one of the first children’s respite and hospice homes in the U.S., providing experienced care, as well as activities and therapies, including a music room and recording studio.

When the Sieck family got to Crescent Cove, Shanna Sieck, Mason’s mom, said it immediately felt like home. Mason loved it there.

After Mason died in March of 2021, Shanna prayed to God, asking for direction and what to do next. As the family was driving home from Crescent Cove, Shanna’s husband, Curtis Sieck, looked at her and said, of Crescent Cove, “every state needs one of these.“

“I looked at him, and said ‘How serious are you? Because, let's do it.’ … We're going to help other families and it not only makes me feel closer to Mason, in that we can honor his last wishes. But we're also having purpose in our own lives … we know where the gap is, so let's fill it and make it easier for families,” Shanna said.

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What are pediatric palliative care centers?

Pediatric palliative care centers are residential facilities that provide support to children and young adults with shortened life expectancies, as well as their families. They offer equipment that’s sized appropriately for children, and their staff have experience treating younger patients.

In 2021, the Siecks founded Mason’s Light House with the purpose of bringing the kind of care they received in Minnesota to Iowa. The nonprofit’s name is a reference to the light Mason brought to the world and the mission to build a respite and hospice care home.

“A lot of people think that it's like a lighthouse in the ocean, it’s not. It’s more so because every time he walked into the room, he lit it up, and he just had this huge smile,” Shanna said of Mason. “He was always worried about everybody else. He wanted everyone else to be happy and loud.”

Mason was in constant pain from the tumors in his body, but Shanna said he was always worried about others, even at school.

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“A kid got hurt at recess one day and fell, nowhere near an emergency,” Shanna said. “And Mason runs over there, and he's like, ‘do you need CPR?’ And he was going to start performing CPR … it's just kind of like in his blood to just want everybody else to be doing OK. But he definitely didn't want the focus on him, he just wanted everyone else to be happy … He was just so full of love and light that he just wanted to share all the love with everybody.”

Even after he died, Shanna said there were signs that Mason’s light was still there.

“... We noticed every time we would go somewhere, we would see, like these huge sun rays, like shining in our car window, or like outside, you couldn't miss them,” she said.

Mason’s Law is ‘a big deal’

When Shanna decided to move forward with creating a pediatric palliative care center, and decided the next step needed to be legislative action to create a license for such a center, there wasn’t much of a blueprint for her to follow. There are just three pediatric palliative care facilities in the U.S.

Shanna worked with Jonathan Cotter, CEO and founder of Children’s Respite Homes of America, and his network to help develop language for a bill that she could take to Iowa lawmakers.

Cotter has been working to bring pediatric respite care and hospice homes to every state. He hopes state Medicaid funding could be provided to help facilitate this type of care across the U.S.

While pediatric facilities in other states have been able to open through medical licenses, such as a hospice license, those licenses aren’t specifically intended for pediatric palliative care. That means state Medicaid funding can only be used for things such as hospice care, but the not the full spectrum of services a center may provide.

Once she had the framework for a bill, Shanna — whose professional training is in dental hygiene — began reaching out to state legislators and advocating at the statehouse.

“I heard someone once say just find a mom who's lost a child that's on a mission, because you're not going to be able to stop her. And I really feel like that's true...” she said.

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Earlier this year, thanks to work Shanna did at the Iowa State Capitol, speaking with lawmakers and sharing her family’s story, the Iowa Legislature passed and Gov. Kim Reynolds signed House Family 933, also known as Mason’s Law.

The law creates a pediatric palliative care license to establish residential care facilities for children under 21 with chronic and life-threatening illnesses who are expected to have shortened life expectancies.

“If we had a perfect wish and a vision, what we would have come up with is we wish that every state had a pediatric child care center license,” Cotter said. “Well, now what happened in Iowa with Mason's law, that's the first in nation for this visual model to now be translated into law and be defined anywhere. This has not existed in law until Mason's Light House. That's how big of a deal this is to us.”

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Cotter and his wife co-founded Ryan House, a pediatric palliative and hospice care center in Phoenix. It’s named after the Cotters’ son, Ryan, who died in 2018 at the age of 17.

“Ryan House does this kind of care, but doesn't have a license like this and doesn't connect it to the Medicaid department in Arizona. Therefore, it has to be funded through philanthropy only. And now because of Mason's Law in Iowa, the opportunity now is to help make sure that the system will fund this house,” Cotter said. “You'll still always have to raise money for things, but the dependence on philanthropy will be greatly reduced, and so it will have an opportunity to be much more sustainable.”

Mason’s Light House will provide care to Iowa families

With the bill passed, Mason’s Light House is looking to build a pediatric palliative care facility in the Iowa City area that will offer seven suites for hospice care. It also will offer 24/7 respite care. Services will be offered free of charge to the families of medically complex children.

Beyond the suites, the planned facility will have a music room, hydrotherapy room, sensory room and a craft room. Additionally, there are plans to bring in other enrichment activities such as pet therapy, music therapy, hydrotherapy and grief support services. Mason’s Light House also plans to have a chaplain and other spiritual services.

“Providing the care that we would provide is not just to the patient, it's also to the family. And so you're setting them up, you know, to be to have a healthier journey through the whole process,” said Shanna.

Respite care will be a key aspect of Mason’s Light House. Respite care is typically an overnight visit of 48 hours or longer. It offers a chance for parents and families to ensure their medically complex child is receiving skilled care while families travel out of town or spend time with their other children. It also can offer new experiences to children.

“You immediately have to become a nurse,” Cotter said of caring for a medically complex child. “You didn't go to school to become a nurse, but now there's breathing machines and lots of medicines and lots of appointments and just it's really, really tough. There's joy in this journey, for sure, but also it's very exhausting. It's very tired, and parents just need a break at the end of the day, and there is no place in your community to get a break. That's why your community needs a place like this.”

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Becky Benson, Clinical Professor of Pediatrics-General Pediatrics and Adolescent Medicine at the University of Iowa, said a facility like Mason’s Light House will be a great addition to specialized pediatric care in Iowa. While there are other hospice options across the state, Benson said that it can be challenging to find a setting that has both pediatric sized medical equipment and staff that work with children.

“I think it’s going to be a great option for families for whom maybe being able to provide care for their child at home at end of life might be a challenge, or they might not want to be in a hospital setting, and so having just a beautiful place to have that kind of care being provided is going to be really beneficial,” said Benson.

In terms of the respite care aspect of Mason’s Light House, Benson said there’s likely hundreds of kids and their families who could benefit from it.

“We're very eager for this to keep making progress and to collaborate with them for the benefit of so many kids throughout Iowa,” said Benson.

Nonprofit raising funds to build near Iowa City

The nonprofit is hoping to raise around $14 million to pay for land and to build Mason’s Light House. After a previous location fell though, the nonprofit is looking for land in the Iowa City area with the hopes of opening the doors of Mason’s Light House by 2028.

“We have a big fundraising goal, but it's not just about that. We really love to hear other people's stories too, and why they're connected, or why this speaks to them … if we can just show our love and light to people and help them through their journey, maybe we'll make a difference for them,” said Shanna.

Mason’s Light House regularly holds fundraising events to support the nonprofit’s mission. The nonprofit is doing a fundraiser with the Iowa Cubs Sept. 5 and will host its annual gala Nov. 15 in Riverside.

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Comments: megan.woolard@thegazette.com

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