As told to Macey Shofroth | Photo by Duane Tinkey

Shanna Sieck and her husband, Curtis, decided she’d stay home with their children after they were born. 

Her role of caregiver took on a whole new meaning when her middle son, Mason, was diagnosed with Gardner Syndrome at age 2. They received the devastating news that Mason needed to be in hospice care when he was 6. At age 7, he died from his illness. 

Mason was supported in his final days by Crescent Cove Respite and Hospice for kids in Minnesota. Moved by the incredible care Crescent Cove provided Mason and the rest of their family, Shanna and Curtis set out to open Iowa’s first pediatric hospice and respite home. 

They are currently fundraising and searching for a site for “Mason’s Light House.” The nonprofit will become only the fourth pediatric hospice and respite home in the United States. 

Shanna was born and raised in Grinnell, where she and Curtis live. They have two other children, Colton and Izzy. She sat down with Fearless to share how she’s honoring Mason’s life and ensuring other kids get the same care as him. 

The following story has been formatted to be entirely in her words, and has been edited and condensed for clarity.

---

Mason had RSV when he was 4 months, and we found a little bump by his temple. They thought it was just a cyst, but then it started growing. When he was 2, we removed it, and they came back and said, “No, this is not a cyst. This is Gardner Syndrome. There’s no cure, and he’s going to get a lot more of these tumors.” In fact, we had already noticed by the time that he had gotten that removed that there were other bumps in other places. 

We had to be followed by a specialist in Minneapolis at the University of Minnesota. Our choices were Minneapolis, Utah or Boston. We did go to Boston, but they suggested because of how often treatment would be that it just wasn’t feasible for us to stay in Iowa and go there. 

He had a whole team of specialists. I’m pretty sure we ran through every specialty at some point, and then he just started to get more and more pain. We could just tell. He wasn’t being the same, his pain was even causing different mood and behavioral things. In October, his school called and said, “This is too much for him.” He was only going 3 hours a day, but he was in pain almost every day and we had to pick him up early often. That’s when they put him in hospice.

Because where we were located in Grinnell didn’t have any palliative type care, they put him in hospice so he could get more of the medicines that he needed. Home hospice did not go well for him at all. It was only getting worse. So we called back up to his team, and they brought us back up to the hospital there and then told us about Crescent Cove. 

If you’ve ever experienced adult hospice, it’s very doom and gloom. You’re sitting there basically waiting for them to pass. With children’s hospice, it’s completely different. When a child is sick with a cold or flu, they’re still playing intermittently. Same thing. These kids are still wanting to play and be kids when they feel good. They need that place to be able to run around and hoot and holler. We had called adult hospices and they wouldn’t let our whole family be there at the same time. 

When we walked through the doors at Crescent Cove, which is the model that we’re building off of for Mason’s Light House, it was like he was a new Mason. They thought he would last longer than six days. 

The staff there was so welcoming that it literally felt like they were family the second that you walked in, and they were so helpful. They walked us through every step in a way that was so different than just being with doctors and nurses. It was a whole family-centered thing. “What do you guys need at this step? What do we want to get accomplished during this time?” They just really listened but at the same time gave us our space. They did their best to make Mason, especially, have fun and do whatever he could in those last days. 

Mason always wanted to make people laugh and was so caring of other people. Most people who knew Mason until right up at the end would have said, “I don’t think anything’s wrong with him.” He would hide every bit of his pain. He was 7 when he passed. Every day I would lay in his bed with him. Colton, our oldest, wouldn’t leave his room. Mason would wake up every morning and say, “I just love it here.” He told me he wished every kid could have this place. 

They made sure we could do things that I didn’t think of, too, like all of the memory making. We did tons of hand prints and molds. We did family photos. Colton, who was in seventh grade, definitely had a hard time, and they were finding different things for him to do, too. They gave him a box and he used the solder gun and made a design. He just moved to college and took it with him. 

It was bright and cheery and so colorful. They made the machines very discreet. It was also a respite care, so there were kids that needed 24/7 medical care, and Mason loved playing with other kids. It’s just a very uplifting place. 

On the way home from Minneapolis after Mason passed, my husband said, “Every state needs one of these. This is a terrible drive home.” Later, I asked him, “How serious were you?” And he said, “Let’s do it.” Mason is our passion, and we know how much he would want this for other kids, and that just drives us more.

I had to step into learning how to do this. This is not my background. We lost him in March 2021, and in August we were meeting with people to start figuring out how to get the nonprofit started and everything. There are a lot of kids in Iowa who need this service, so I wanted to lay the groundwork that if Mason’s Light House isn’t the only place that opens like this, then there are ground rules. I wanted to be sure that if another entity opened that it was done correctly, which is why we went through legislation. There’s a special clause for us underneath residential facility rules. We worked with the Department of Inspections, Appeals and Licensure to get everything in place, and it makes it easier to have everything concrete. We also ensured we are qualified to receive any state funding that hospices and residential facilities can receive. We’ll be going back this session because there are a couple things that we need to tweak. Once we get it set, the national center is taking what we do in Iowa to the federal level to be able to open one of these homes in any state. There are about 40 other homes in different states trying to open. 

In our legislation, we define a pediatric palliative care patient as anybody who is medically complex from the age of 0-21. They also can qualify for hospice, so we’ll have both respite care and hospice. 

Mason’s Light House will be free of charge to families. These families are going through so much. Why would you add the financial burden as well? Meals will be provided while they’re there. We’ll be located in Iowa City. We have our whole concept design. I just want it to be like a heaven on earth. Peaceful, full of colors and nature and just so inviting and welcoming. For kids, you need play places and inclusive play areas. Minnesota has a miniature baseball field because of the Twins. There’s just different extra things for these kids to do. They had inside hammocks, interactive walls, huge murals. There are pieces we found there that we felt are non-negotiable. We have to have these because it’s where I found the most comfort. 

I went and visited all of the existing homes and so we are trying to take the best practices of each of them. We plan to have four respite rooms and three hospice rooms that are connected to family suites so you don’t have to be far from your kid. One of my things was that I didn’t want to be down the hall or in a separate place. Then also having another family suite and sitting room was good when things got to be a lot. 

It won’t look like a big facility. It very much looks like a house. We have plans for a huge garden and a water fountain, a gazebo. It’s very peaceful, almost like a big ranch-style home in the country. 

Crescent Cove had a really good team of volunteers. All the meals were made by volunteers. Volunteers would come in and clean so we could really focus. Volunteers would come and play with your other kids. That level of support helps with your nerves. We’ve already started talking with the University of Iowa and their music therapy department and child life specialist department. 

We had a location that didn’t work out, so we are working on a new location. We’re hoping here in the next few months that we are able to disclose more. We’ve got lots of fundraisers. We do our gala in November every year because Mason’s birthday was in November. People from the University of Iowa come and we’ve seen different hospice companies and community supporters that are excited about us. Word of mouth is spreading. 

We’re hitting the ground running. Someone asked, “What if someone tells you no?” I said, “It’s not no, I just have to find a different way.” We’re going to keep pushing. We thought the legislation would take two to three years. A few months later it was passed. Each step I say, “Mason, you’re doing this. We’re doing this.” It just keeps driving us even more. 

We work with the other homes that are trying to start up. It’s a community that just wants better for the kids. In the U.K., they have 56 of these homes. That would be the equivalent of 250 or so over here. And there’s three. Just trying to help get this service over here makes me proud, because I know Mason would be so ecstatic. 

My daughter, Izzy, was 1 when Mason passed away. She just turned 6. It’s kind of a bittersweet moment just to know what we were going through with him at that time and now we’re also at this age with her. Kids grieve differently, so just being able to help support families through that process as well is important. It’s not just for the kids. We will be family-centered and offer different grief things for parents, siblings and grandparents. 

I have that story. I have the reason of why we’re doing it, and I think that speaks volumes to people who don’t really understand. 

It doesn’t matter how long it’s been. It’s like it’s yesterday. I’m that mom that there’s got to be something good that comes out of a terrible situation. Just knowing that we can help another family not experience what we went through is huge for me. Being able to help one family alone would be good enough for me, but knowing that Mason said every kid needs to have this, I’m like, “OK, I guess we’re meant to help any family who needs us.” 

Just to know how proud he would be, and for him to know that we’re not crying every day, because that was one thing he didn’t want. He knew where he was going. He was ready. I think that’s what drives me more, that it can be beautiful. It’s hard, and yes, there is grief every day. Doing this helps because I feel like I’m doing so much for my other kids too, that I’m not leaving him out. I’m still incorporating him in everything that we’re doing. Not every family will be able to do something like this or talk about it. But for us, I feel like we need something good. To see this all come to fruition, it’s special. 

Grief is terrible, but at the same time, it can be as beautiful as you want it to be. It’s never going to be easy, no matter if it’s a child or adult. But the burden can be a little less and you can make the experience the best experience that it could possibly be. For those that are going through grief and the survivors, the best way you could ever support them is just setting that foundation up to be the best possible experience.