Superhero Addy’s family gives to other families by Michelle Libby

Addy Madsen is officially in remission

When one is a superhero there are bound to be challenges. For Addy Madsen of Raymond, her challenge was beating leukemia. 
 

In June of 2015, Addy was diagnosed with a rare form of leukemia that usually strikes the elderly, but after two rounds of chemotherapy and a stem cell transplant from an anonymous donor, she is home and adjusting to being an adventurous first grader. In January 2016, she was officially in remission. 

Doctor’s appointments continue to be scheduled to follow her organs, because post-transplant kids can have late term effects from chemotherapy, said Jessica Madsen, Addy’s mother. 

“In the beginning it was so much to wrap your head around. You have all these ideas in your head about cancer. Since that time, we are so much more educated on cancer and survival rates. We feel really lucky. That’s what’s driving us to help other families,” Jessica said. “It’s a club you never want to be a part of. Early on we really struggled. I wanted to let people into her journey. I didn’t know what we were getting people into, but I wanted the page to give people hope.” 

With the knowledge the family learned, and the monetary support, they were able to make the most of the treatment that Addy received in Boston at Boston Children’s Hospital and Dana Farber Cancer Institute. They also receive care through Maine Cancer Network.  

“We are really grateful for Addy, her doctors and her outcome. We just want that for every kid facing cancer,” said Jessica.

The Super Hero Addy Foundation set up for Addy “started when she got sick. Cancer is expensive,” said Leigh-Anne Fortin, who set up the account. “It was a way for people to help. We set up a Go Fund Me account and held a benefit two years ago. It helped Jess, Dave and Cassidhe.” The fund was a way for those who wanted to help, but didn’t know what to do, to express their support. 

Jessica left her job as a middle school dean to take care of Addy, while she lived in Boston for her treatments. The family had to do extensive cleaning, put in air filtration systems and other modification to the house. 

“It’s super expensive to do when a child has a brand new immune system,” said Jessica. When Addy was discharged she had 20 different medications. Jessica was her fulltime caregiver. “After our experience, I can’t imagine going without that support,” she said.

“We had a huge backing and we thought, we have something here,” said Fortin. “We decided let’s

keep it going. Let’s help other families with whatever we’re able to do.”

Last year, the family held a Santa fundraiser and brought in almost $14,000. With help from the Jimmy Fund, the Madsen’s were put in touch with a family from Maine whose child was undergoing a stem cell transplant. Jessica called it humbling and said it took her right back to the place she was when taking care of Addy. 

“It was hard to hear their story. We have this common bond. It’s the sense of building a community,” Jessica said. Money that the foundation raises will support pediatric oncology patients in Maine. 

This year’s fundraiser the All that Glitters is Gold black tie gala will take place on Friday, December 8 at the Italian Heritage Center in Portland, from 7 p.m. to midnight. There will be a guitarist and a DJ as well as silent auction items like airline tickets, Sunday River passes and more. There will be a photo booth and a live auction. “It’ll be a fun night out. A great bonus to know you’re helping someone,” said Leigh-Anne who helped organize it with Teresa Esposito Dalton. Their goal is to raise $25,000 at the gala. “It’s a huge help for those families,” she added. Tickets are $60 per person.

“All ticket sales go back to the foundation,” said Jessica. “It’s the positivity I like about it. Cancer is pretty terrible. It’s not fair what these kids have to go through. These kids are amazing. We’re never going to cure cancer with our foundation, but mortgages or electric bills still have to be paid.” 

“This way they can concentrate on what’s important,” said Fortin. Sponsors for the event are Yankee Ford/Brunswick Ford/Rockland Ford, MGM Builders, Homestead Mortgage, Spiegel Scrap Metal, Martin’s Point Healthcare, Naples Marina and Maine Elevator Specialists.

Addy is a typical first grader with an unusual story. She likes lipstick and high heels. When she talks about having cancer, she said “When I was bald.” Jessica described it like a child saying, “I broke my arm.” Addy says, “I had cancer.”

“She’s kind of moved on with life,” Jessica said. “She’s spunky, sassy and loves gymnastics. She misses her time at Boston Children’s Hospital. She thinks it was like a hotel.” 

This summer Addy met her anonymous donor, when Brad Myers flew up to Maine to spend time with the family. Addy threw out the first ball at a Sea Dogs game and Brad was the catcher. It was a great reunion. 

“Brad is such an awesome part of this story,” Jessica said.

To register for All that Glitters is Gold to help children and families facing pediatric oncology, visit www.eventbrite.com/e/all-that-glitters-is-gold-tickets

Local student seeks help battling cancer - By Michelle Libby

Windham High School student Hunter Loring has spent the majority of his junior year in the hospital. Halfway through the soccer season this past fall, he had to stop playing because of the pain in his back. When he no longer could walk, stand or sit, muscle relaxers didn’t work and hot and cold didn’t touch the pain, he went to the doctors. After an MRE, doctors found two cancerous tumors wrapped around the nerves in his lower back. 
 

“The tumors he had were in there a long time,” said Hunter’s mom, Wendy Loring. “It has been weird from the beginning.” The tumors were taken out and tested. The rare tumor, called Myxopapillary Ependymoma, is more often found in 40- to 50-year-olds. The doctors at Maine Medical Center said they had never seen a kid with this type of cancer, Wendy said. 

Since the fall, Hunter has had two major back surgeries and has been under anesthesia eight times, six of those so that he could relax enough to be in the MRI machine. He is on constant pain medication and is only now able to walk 300 yards, with the medication. He started radiation to kill the cancer cells, but wasn’t able to do it consistently, so they suspended that until he could try to get his pain under control. 

Hunter is not able to sit in a chair or lay flat, according to Wendy. He now can sit up to 30 degrees in his bed. 

After the second surgery, the family was told that Hunter would be back on the slopes snowboarding before the end of the season. Hunter has been disappointed that this hasn’t happened. “He thinks it’s never going to happen. The chronic pain scares him,” said Wendy. “This is one chapter in our life. We’ll get through it.”  

His family has been looking for a facility where Hunter can do inpatient pain management therapy, occupational therapy, physical therapy and counseling, all in addition to radiation. “He needs so many other things that go with the radiation,” said Wendy. Once the radiation begins he will need 24 treatments over five or six weeks. 

Hunter has been at Maine Medical Center’s Barbara Bush Children’s Hospital wing since January 14, unable to go home while waiting for a bed in a pediatric hospital that can meet all of his needs. He has had some of his friends come in to visit him, which he likes. He plays X-Box, but he isn’t able to keep up with his school work, nor is he able to continue participating in the culinary arts program in Westbrook. “That’s what got him to go to school,” Wendy said. 

Wendy, an administrative assistant in the RSU14 superintendent’s office, has had to take time off to spend time in the hospital with Hunter. She also works two other jobs that she’s had to cut back on. She has had her car packed to travel to the nearest hospital that has the care that Hunter needs since January 31. The cost of some of the rehabilitation hospitals average $2,700 a day per bed. The Loring’s have insurance, but it won’t cover the whole expense. 

Michael, Hunter’s father, works for Walmart’s distribution center. 

“It’s just exhausting,” Wendy said, of trying to keep up with work, Hunter and their oldest son, Tyler, who is 21. 

To help the family with the mounting medical bills, friends have arranged a spaghetti supper and auction fundraiser on March 12 from 5 p.m. to 7 p.m. at the Windham High School cafeteria. Donations will be accepted at the door. Volunteers have been stepping up and the coordinators, a group of five, have been successful in getting donations for the silent auction. The LEO Club from WHS has volunteered to put on a cake auction the same night. 

Kellie Sampson, Wendy’s co-worker, has taken the point in the fundraiser. She wanted to help with the dinner, “because she’s my friend and because I care about her and her family.” The hope is to raise between $3,000 and $4,000. All proceeds will go to the Loring family.

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“The community has really stepped up,” Sampson said. So far the auction has a large number of gift cards as well as two signed basketballs from Dave Cowens, formally of the Celtics basketball team. Other notable items are a certificate for a driver’s education class, a kid’s crooked playhouse and a crooked dog house, $500 worth of services from Designs by Gary and Arkie Rogers has donated a septic cleaning. 

“It’s taken on a life of its own. Everyone wants to help,” Sampson said. 

Hunter and his family are hoping for a pediatric, inpatient hospital that can give him all of the services and therapy he needs, but so far they are striking out. At some facilities, they only have outpatient care, but Wendy said that Hunter can’t ride to get to the hospital every day. At others he’s on a waiting list with 40 people ahead of him. One hospital is in Ohio and Hunter won’t be able to get on a plane, she said. “We’re stuck.” 

“It’s going to be a long, slow process,” Wendy said. “He’s in less pain because he’s on more drugs. It’s the worst thing to watch,” she added.  Dealing with the chronic pain has been one of the hardest parts for Hunter. 

“There are not a lot of places to take kids with chronic pain,” Wendy said. “We’re playing it day by day,” said Wendy. “We’re moving to get new eyes and ears on the problems.” 

Hunter started a consultation for radiation this past week at MMC. 

“I’m a believer that things happen for a reason,” Wendy said. She’s hoping for the best. 

Donations can be made by check to Norma J. Huntley/Hunter Loring Benefit, TD Bank, NA, Mailstop, ME 2-076-031, PO Box 9540, Portland, ME 04112-9540. There is a GoFundMe page set up.