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Randy and Amy Stoen’s daughter Madelaine Angell was born on September 25, 2004. With her blue eyes and blonde curls, Madelaine became the center of their world and their constant joy. Three years later they faced the harsh reality of pediatric cancer when their daughter was diagnosed with a rare and aggressive form of the disease. Shocked and devastated by the news, they relied on the support of family and friends to face the situation and help their daughter fight. They credit Madelaine for teaching them how to have strength, keep the faith and take one day at a time.

Life Changing News

In November 2007 Randy and Amy noticed a cyst on the inside of Madelaine’s nose. Their local health care center referred them to the Mayo Clinic in Rochester, Minnesota, and in February, 2008, Randy, Amy and their three-year-old daughter met with the ENT department. “They did an MRI and all tests indicated it was just a cyst,” Amy says. On February 20, Madelaine underwent surgery to remove the cyst. The surgery was scheduled to last two hours but the family was in the waiting room for six hours as the surgery stretched on. “When it took so long, I knew in my gut that there was something wrong.”

After hours of uncertainty, the surgeon told the Stoen family that Madelaine had Rhabdomyosarcoma, a rare and aggressive cancerous tumor of the muscles. Madelaine was admitted to the hospital immediately and “from there it was just a whirlwind,” Amy says. While in surgery, the doctors discovered the cyst on the inside of Madelaine’s nose was cancerous and that it had spread all the way across her left cheek. The surgeons removed the cancerous portions during her surgery but that was only the beginning of Madelaine’s journey.

The following day Randy and Amy met with Dr. Arndt, head of the pediatric oncology department. “She told us everything we needed to know at that point,” Amy remembers. “She explained that Rhabdomyosarcoma is a rare type of cancer and what some of our options were.” The Stoens were given a treatment schedule to follow that began with many tests followed by chemo treatments. “On that Friday, she had a bone scan with contrast, an MRI and then she was dehydrated so they gave her fluids. The following Monday and Tuesday she had a bone marrow biopsy, spinal tap and internal jugular vein Port-A-Cath placement.”

There are two forms Rhabdomyosarcoma: embryonal, which is most common, and alveolar. When the tests came back, Madelaine was positive for alveolar – the form that usually requires more intensive treatment. “It was very emotional. Cancer was the furthest thing that, going into the surgery, we thought the outcome would be. Our world just turned upside down,” Amy says. “We wondered, what is it going to take? And what are we going to have to do to get her healthy again?”

Treatment Options

One week after Madelaine’s surgery she started inpatient chemotherapy. “Every time she was in the hospital, we stayed with her,” Amy remembers. “We never left her alone.” Madelaine was put on a rotation where she’d have weekly chemo with Vincristine, followed by five consecutive days of two chemo drugs, Vincristine with Irinotecan, and then inpatient chemo treatments lasting three days.  During that time, Randy and Amy brought their little girl home to Claremont, Minnesota, as often as possible. “We felt it was very beneficial to have Madelaine at home, in familiar surroundings, to make her as comfortable as possible.”

Because the chemo was causing Madelaine to lose weight, the doctors also started her on a feeding tube. “I fought it at first,” Amy says. “I felt like feeding her was one thing we could control but, she had just had mouth surgery and we came home from the hospital with a whole slew of medicine we had to give her. She was too small to handle pills so we tried crushing them and hiding in food, but she wouldn’t take them. The feeding tube allowed us to give her the medication she needed and she still ate with us during the day.”

“There was a clinical trial (ARST0531) we were looking at where you can do either plan A or plan B. The difference between the two was when radiation started, at either four weeks or 12 weeks and plan B had the added chemo drug, Irinotecan. I read through everything and thought that if plan B is newer and has a better chance of survival, we’re going with plan B.” Plan B would allow Madelaine to begin radiation four weeks into her treatment. The only drawback to choosing this plan was that they had to be accepted into the trial by the National Cancer Institute. “I felt like all we did was wait and wait. Then on the first day of Madelaine’s chemo treatment Dr. Galardy gave us the thumbs up, that we got the plan we wanted.”

“I am glad we chose that plan but studies haven’t showed yet if one plan is better than the other. For my self-assurance, I wanted to do everything possible to make sure she could beat this. And if that meant radiation at four weeks instead of 12, that’s what we wanted to do,” Amy says. On March 8, 2008, a scan indicated a black spot on Madelaine’s face. “They took her back into surgery and looked at the tissue but it all came back negative. It was a pocket of infection,” Amy says. Following her second surgery that turned out benign, she started radiation.

“Before Madelaine’s radiation could begin, they had to make a mask to fit her face where the radiation was going to be given,” Amy remembers. “This mask was put on Madelaine’s face/head everyday while getting her radiation.” To receive the treatments, Madelaine was anaesthetized five days per week for four weeks in a row. “Since she was put to sleep, this meant nothing to eat prior to her treatments and then after we would give her something to eat to settle her stomach and we would not drive home until she was fully awake because any movement tended to make her more nauseous. There were times when we would be half way home when she would throw up and that meant her feeding tube usually came out too so we would turn around and head back to get it re-inserted.”

Madelaine endured numerous adverse side effects from the radiation treatments including radiation burns to the skin on her face and in her throat, along with mouth sores. “We put ointment on her face nightly and she had a prescribed mouthwash for her burns in her mouth,” Amy says. As for long-term side effects of the treatment, Amy says, “Some of the possible side effects of the radiation (given the location of her cancer) are cataracts, stunted bone growth in the face and dental issues with her adult teeth.”

Unexpected Gift

While in the waiting room during Madelaine’s second surgery, “Our heads were spinning and we were feeling devastated,” Amy says. The uncertainly of the surgery results were weighing heavy on the couple when they received an unexpected phone call. “Randy’s cell phone rang and it was one of Oprah Winfrey’s producers calling,” Amy says. “She told us that they wanted to do a story on pediatric cancer. It turns out the sister of one of Randy’s good friends had written a letter to the Oprah Show about Madelaine and it caught their attention.”

In March 2008, three members of Oprah’s staff came to the Stoen’s home. “They watched us get Madelaine up and ready and drove with us over to Rochester that morning. They followed us the whole day, filming. It turned out to be the day she had her feeding tube in,” Amy remembers. “They were with us from sun-up to way past sundown. The sound guy, camera guy and producer really bonded with her – we still stay in touch.”

“They called us a few days later and told us they wanted us to come down for the show the following Monday,” Amy says. “They sent us tickets and everything but, I didn’t want to do it at first.” The Stoens were hesitant about leaving their daughter and struggled with whether or not they should fly to Chicago. On the Sunday before the Monday show, Randy and Amy decided to go and Amy’s sister and friend stayed with Madelaine.

“When we arrived at the studio they told us it was a show on parents who have kids with cancer,” Amy says. “It turned into a very pleasant surprise. At the time, Oprah was doing her ‘Big Give’ and Simon Cowell was scheduled to appear on Oprah’s show and wanted to do a ‘Big Give’ of his own. This is when Simon heard of Madelaine’s story through the producers and Simon was very touched by Madelaine and wanted to help.”

While the show was being filmed, Oprah and Simon Cowell surprised the Stoen family with a generous gift. According to Oprah.com, Simon said, “I didn’t know what to do in this situation other than to do something which I hope will help. I know that you’re having trouble with your mortgage. And as of this afternoon, [it] is being paid off.” He wrote out a personal check that covered their mortgage and promised to be Madelaine’s “guardian angel” if they ever needed anything else.

“It was very moving and very overwhelming,” Amy says. “We were blown away. What do you say? You’re so thankful and grateful but at the same time so stunned and lost for words. We told him thank you but for what they’ve done, we feel like thank you isn’t enough.” Simon’s generous gift enabled both Randy and Amy to take time off of work from February through May to be with Madelaine, go to appointments and get her through radiation. “It helped us care for her in the best way possible,” Amy says. “His gift to us helped us get her through this.”

Clean Scans

In all, Madelaine’s cancer treatment lasted 42 weeks. For her parents, the time is a blur. “When Madelaine was first diagnosed, they told me that in three months you find a new routine. I was so mad, thinking we’d never get used to this! But, yes, you find a new routine, you accept the challenges that come your way and learn to deal with them. And then you get into a comfort level,” Amy says. “At the end of the 42 weeks, I was so scared. We were at the doctor all the time so if something came up; we were there and could get help right away. You didn’t go a week without seeing doctors. They were on top of it. And all of a sudden, you’re on your own. It’s been two years since we’ve been to treatment and just now I’m getting comfortable. We had to find another new normal.”

Now that Madelaine is six years old, she is checked every four months. For now, the family finds comfort in knowing she has clean scans. “For her type of cancer and the strain she has, they say she won’t be considered totally cancer free until the 10 year mark,” Amy explains. “They said once you hit the one year mark, you can breathe a little. Then the next big one is the five year and then 10 year. For now, we take it one month at a time.”

Amy says that although Madelaine scans are clean, cancer will always be a part of their life. “Our lives will revolve around it.” Randy and Amy are thankful to their family and friends, as well as complete strangers, for their support. “It’s amazing how people can just pick you up,” Amy says. “If it wasn’t for them, I don’t know how we’d do it.” Amy also found comfort and support through the community that followed Madelaine’s Caring Bridge website. “When you’re having the lowest lows, you get complete strangers picking you up,” Amy says. “Caring Bridge has and probably always will be my support group.”

Giving Back

“Today is Madelaine’s anniversary. Three years ago today, Madelaine was diagnosed with cancer. We are so proud of Madelaine for her strength, courage and sheer determination. Madelaine has taught all of us to have strength, keep the faith and to take one day at a time.We could not have made it this far without all the support and prayers we received.” –Amy Stoen, February 20, 2011 – CaringBridge

The hardship Madelaine endured over the past few years has made a tremendous impact on her. During sharing time in kindergarten, she shared about her cancer treatments and the results of her scans. When she grows up, Madelaine hopes to be a cancer doctor. “She wants to help people and it touches me watching her be so caring and giving at six years old,” Amy says.

In addition to Madelaine’s desire to help others, Randy and Amy feel strongly about giving back. “When we hear of a benefit, we’re going to try and be there,” Amy explains. “I’ve been down that road; I know that even the littlest things mean a world of difference. We’ll never be able to pay back all the things that people have done for us or personally thank everybody like we should, but it’s a good feeling to give back and to help others.”

As the family moves forward, Randy and Amy treasure their daughter’s health. Madelaine is enjoying life at home and soon will start first grade. She’s also a big sister to Ellie who is 14 months old. “We hope that Madelaine will never have to go down the road of cancer again,” Amy says. “And that we can make an impact on other people’s lives with her story.” They also hope to shed light on pediatric cancer. “If we don’t find a cure, these kids can’t grow up to make an impact on the world.”

For more information, visit www.caringbridge.org/visit/madelainestoen.