This isn’t your typical Make-A-Wish story.
Do a search on youtube.com for “Make-A-Wish” and “sports” and it’ll return countless heartwarming videos of professional and college athletes stepping up to help put a smile on a Make-A-Wish child’s face, almost any of which are virtual guarantees to bring a tear to the eye of anybody with an ounce of compassion coursing through their veins.
OK, so maybe this is a typical Make-A-Wish story, after all.
But there certainly is nothing typical about 17-year-old Amber Louden, who will be a senior at Squalicum High School this fall.
And there is nothing typical about what her Make-A-Wish visit with the Seattle Seahawks last week represented.
“Amber is s special kid,” said Dr. Matthew Giefer, Louden’s gastroenterologist at Seattle Children’s. “She’s faced some big life challenges because of her illness, but she talks openly about how the illness has forced her to grow up early. And she’s grown up in a nice way. She’s modest, intelligent and smart and one of the most well-adjusted kids you’ll ever meet, and her strength and commitment to being well again were obvious.
“That’s what makes this so special.”
‘Her quality of life suffered at times’
Louden said she was first diagnosed with chronic hereditary childhood pancreatitis when she was 10 years old and living in Liberal, Kansas, in the southwest corner of the state, though she had symptoms of the disease that went undiagnosed for a long time before.
According to pancreasfoundation.org, chronic pancreatitis afflicts about five to 12 people in every 100,000 in industrialized countries and involves inflammation of the pancreas that does not heal or improve. Instead it gets worse over time and leads to permanent damage, eventually impairing a patient’s ability to digest food and make pancreatic hormones.
In children, chronic pancreatitis causes frequent or chronic abdominal pain. Other symptoms include nausea, vomiting, weight loss and diarrhea. Some patients may have trouble digesting food and experience poor growth, and diabetes also may appear in adolescence.
Dr. Giefer said chronic pancreatitis in children is very rare, “so rare, there really aren’t statistics on it.” He said he has about 40 kids that he follows at Seattle Children’s, but there aren’t many other specialists elsewhere in the country.
Louden said she and her family moved to Bellingham in October of 2011, in part so she could be closer to Seattle Children’s Hospital.
It was then that she began following the Seahawks.
“We lived with my uncle and his family, and he loves the Seahawks,” Louden said. “I started watching them, and I just fell in love with the team and who they are. I really like how humble they are and their work ethic, and the leadership and sportsmanship they set are a great example. They’re not boastful — they’re confident, but they don’t walk around like they’re better than everyone else in town.”
Watching the Seahawks gave Louden an opportunity to temporarily separate herself from her symptoms and thoughts of surgeries and other treatments. Talking about football and the Seahawks also gave her something to bond with her doctor over during countless appointments and stays in the hospital that forced her to miss school.
And at times, any reprieve was a good one.
“The condition of chronic pancreatitis has a wide range of severity,” Dr. Giefer said. “She had the most severe kind. Her symptoms could be really severe. ... Her quality of life suffered at times. She missed school and was stuck in the hospital for long periods of time and dealt with severe chronic pain.”
‘He cares for me like family’
Over the past seven years, Louden said her treatment for the disease has included six “small” operations.
But more than a year ago, Dr. Giefer approached with an idea to send Louden to Minnesota for a total pancreatectomy. In addition to removing her pancreas, the plan for the surgery included the extraction of islet cells from the pancreas and transplanting them into Louden’s liver to help control her diabetes.
“We trusted Dr. Giefer,” Louden said. “He’s been with us since we moved here. He’s been through everything we’ve been through. He cares for me like family. ... When he suggested this surgery, we trusted him. He knew it was best for me, and he thought it would help me, so we trusted him.”
Louden had the surgery in April of 2017, and after recovery, her symptoms have improved, and she’s been able to return to a relatively normal, teenage life.
She’s still going to need to manage her diabetes, Dr. Giefer said, and she takes digestive enzymes every time she eats, but those are both doable.
“The impact of this disease on her life is much smaller since the surgery,” Dr. Giefer said. “Before, she had daily, chronic pain — going forward, that should be a thing of the past. She’s got her life back, other than a few small hiccups along the way. ... A lot of the credit for this success has to go to Amber and her mom. I suggested something that was a bit out of the box, and Amber and her mom took a leap of faith.”
And Louden couldn’t be more thankful that they did.
“I want to say that my team at Seattle Children’s has been the best I could ever ask for,” she said. “They’ve made such a difference in my life.”
‘I believe she can do just about anything’
When Make-A-Wish, a program that on its website lists a “vision to grant the wish of every child diagnosed with a critical illness,” first contacted Louden about granting her a wish, she said there was never a doubt in her mind what she wanted to do.
“Spending time with the Seahawks was the first thing on my mind and the only thing I wanted to do,” she said. “It’s been my dream.”
And her plus-one to share the dream experience with? That choice was almost as easy.
“Dr. Giefer was one of the biggest members of my support system and was with me through nearly my entire journey,” Louden said. “When I told him I wanted him to join me, he said he’d never heard of any doctors going with their patients. I think it meant a lot to him that I chose him out of everyone else I could have selected.”
Said Dr. Giefer, “It was an honor. I’ve worked with Amber and her mom the past six or seven years. I’ve seen Amber at times do well, but I’ve also seen her at some really difficult times. The last three or four years have been pretty difficult, and for her to want to spend this special opportunity with me ... that’s pretty amazing.”
But it shouldn’t be a surprise, considering the special bond the two have built.
Once she graduates from Squalicum, Louden said she plans to study to become a gastroenterologist, just like the doctor who had such an impact on her life.
“That’s really a nice sentiment,” Dr. Giefer said. “I want her to get whatever she wants out of life. What makes me happiest is seeing the success she’s had over the last year, and I know she’ll be able to do whatever she wants. If that’s medicine, if that’s to be a GI doctor, that’s great. But I want her to do what she wants to do, and now, I believe she can do just about anything.”
‘This was like a celebration’
Last week, Louden got to prove that she truly can do just about anything when she joined nine other Make-A-Wish children from across the country for a special Seahawks event that lasted the better part of the week.
On Aug. 7, she visited CenturyLink Field, where she found a locker, complete with a personalized game day jersey with the date she had her surgery and other gear, in the Seahawks locker room. The group then got their names called out over the public address system and got to run through the same tunnel the Seahawks use during introductions. They mingled with Seattle mascot Blitz, the Seahawks cheerleaders, the Blue Thunder drum corps and various Seahawks alumni.
They also got to help paint the Seahawks’ midfield logo.
“That was pretty humbling to be a part of that group,” Louden said. “There are a lot of kids that don’t get to have the kind of life that most kids have. To be able to have my life back, that’s something I’m really grateful for. Some kids have an injury or illness they have to live with their entire life. I had a great time with them, and it meant a lot to me to see the kids doing what they wanted to do.”
That’s nothing compared to what the group got to do Aug. 8, when they visited the Seahawks training facility in Renton. While at the Virginia Mason Athletic Complex, Louden said the group got to eat in the same facility the Seahawks do, tour the practice fields and watch the Seahawks in training camp.
After practice was done, several of the players and coaches, including linebackers Bobby Wagner and Shaquem Griffin, defensive back Shaquill Griffin, receiver Tyler Lockett, quarterback Russell Wilson and head coach Pete Carroll came over and spent time with the Make-A-Wish kids.
Louden said she got to ask Carroll how many packs of gum he went through on game day — the answer was “a couple” — and Dr. Giefer was impressed that she joked with Lockett about recently unfollowing her on Instagram.
But Louden’s said her highlight was definitely getting a chance to play catch with Wilson for a few minutes.
“That was surreal,” she said. “I’ve always wanted to meet him. I’m so invested in the Seahawks, and to get to talk to him and play catch, it was amazing. ... He was so kind, and he told me people like me inspire him. ... That made me so proud of myself and the person I have become. The whole experience is something I’ll never forget.”
The group’s experience wrapped up Aug. 9, when they got to attend the Seahawks’ preseason opener against the Indianapolis Colts.
“Amber was the star of the show,” Dr. Giefer said. “We were just there to support her. Her mom and I took a few steps back and just enjoyed watching her interact with everybody and just be a kid and enjoy this amazing opportunity.
“While I was watching her, it did kind of hit me that this was like a celebration for her. Most Make-A-Wish kids are still fighting or will always be fighting, but Amber has fought her way through, and this whole experience was a nice way to celebrate some difficult patches in her life. She’s had a difficult journey, and now hopefully that’s in the past.”