Tuesday, November 21, 2017

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

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

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

A Thanksgiving reminder to enjoy what we have, where we are now - despite challenges By Linda Gregoire

The following is a letter that the editor, Lorraine Glowczak, asked the author to share with our readers. The editor offers the following introduction to that letter:

As most of us busily prepare and shop for the traditional Thanksgiving feast, we also tend to hurriedly go about checking off the “to-do” list that is a mile long. Sometimes, between the demands of work, family and other community efforts, we can get swept up into all the stresses placed upon us, losing sight of things that we deem important; gratitude and gathering with family (in whatever way family looks for you).

Linda Gregoire of Windham recently shared a letter with her friends regarding her own life as she and her family prepare for Thanksgiving 2017. Although I suspect she does not need an introduction to most of our readers, here’s a little synopsis for those who may be new to the Gregoire family journey.

Linda and John Gregoire
On December 17, 2007, Linda’s husband, John was diagnosed with Amyotrophic Lateral Sclerosis (ALS). According to the ALS Associations, ALS “is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. A-myo-trophic comes from the Greek language. ‘A’ means no. ‘Myo’ refers to muscle, and ‘Trophic’ means nourishment – ‘No muscle nourishment.’ When a muscle has no nourishment, it ‘atrophies’ or wastes away. ‘Lateral’ identifies the areas in a person's spinal cord where portions of the nerve cells that signal and control the muscles are located. As this area degenerates, it leads to scarring or hardening (‘sclerosis’) in the region.” www.alsa.org

This hardening and atrophy eventually affects the muscles in the mouth and throat, making the ability to eat for the person with ALS difficult or non-existent. As a result, feeding tubes are put in place to provide the nourishment needed. Five years after his diagnosis, John was required to use a feeding tube.

Linda and John agreed to share her note with our readers on how they will enjoy their Thanksgiving feast in the midst of the challenges ALS presents. 

May the following letter provide a reminder to us all, no matter our own individual difficulties, to be joyful, happy and most importantly – grateful- despite it all.

“I was asked yesterday by the caretaker who installed a new tube feeder how we handle holidays that are celebrated with food. We all want to do whatever we can for our loved ones with a feeding tube to make life easier and normal, so I really appreciated her thoughtful question.

The last 10 Thanksgivings we’ve been faced with small incremental changes that we’ve adapted to because that’s what you have to do with ALS. I always say, ‘if you don’t go with the flow, you get caught in the rip tide.’ If anyone has had the experience of a rip tide you know what I mean - the more you try to fight it, the worse it gets. If you trust and swim in the flow, you’ll be safe. 

So, this morning after I started John’s feed and he fell asleep peacefully while his tummy was being filled, I realized how at peace he is with his current situation. In the beginning with his new tube, we struggled until we got him on a healthy formula. He still ate for pleasure by mouth, so a bowl of pistachio ice cream was eaten while formula was finding its way into his tummy. He had the best of both worlds.

I think the two saddest days for him was when he could no longer eat steak, one of his favorite meals. That came early on, as it’s so hard to chew. 

The next saddest day happened about a year ago when John would sneak a hand cut French fry when Matt [our son] and I ate at Elevation Burger. He choked so bad I almost thought of calling for help. However, once the choking passed he looked at me and shock his head ‘no.’ I asked, ‘No more for now, or no more forever?’ Tears welled in his eyes and I knew - no more forever. We both cried. 

The one thing he still can take by mouth and never chokes on is a small piece of communion bread and a sip of “wine” (grape juice) at church and, God willing, he’ll be able to forever. 

The families' dogs are thankful, too.
So as Thanksgiving approaches, it made me think how we’ve handled the holiday meal. We gather at my sister’s with as many family, friends and dogs as we can squeeze into her home - which can be 20-25 people and up to 9 dogs. 

The food has been mostly grown and raised by my sister and brother-in-law, which is a labor of love. It’s prepared with everyone in mind with oyster stuffing for some and regular stuffing for the rest of us. We all share in bringing what we can, enjoy each other’s company and catching up on life. Then we gather at the table, elbow to elbow and we remember our family that’s with us in spirit and give thanks for those we still have with us to love. 

John is seated at the table with his own spot and place card as he enjoys his ‘dinner’ too. He’s the only one allowed his electronic device because it’s for speaking and he’s the self-appointed one to keep track of the football game for the entire table. That’s as important as cooking the turkey.
We chat, pass food, laugh and, of course, we eat. 

Thanksgiving Dinner is more about who’s around the table then what’s on the table. We feed our bodies and enjoy the food but more importantly, we feed our souls with love and thanks for all we have. 

So, for all our tube feeders, join in the feast and give thanks and feed your soul on love and life. This is what I’m grateful for everyday of the year, not just the days of November. Happy Thanksgiving to you all and God bless you all.” Linda Gregoire

Editor’s note: As we enter the holiday season of giving, please remember to give a financial contribution in the amount that works for you on “Giving Tuesday”, November 28. Give a donation to your favorite non-profit organization or consider giving to John and Linda’s non-profit, Hope-JG. Hope-JG is dedicated to helping families living with ALS and other neuromuscular diseases, live life to its fullest by leveraging existing world class technology, supporting technical innovation and biomedical research. www.hope-jg.org.

Friday, November 17, 2017

Jordan-Small Middle School “adopts” a school hit by the hurricanes in the U.S. Virgin Islands by Jennifer Davis

The Sprauve School prior to hurricane damage
This year has brought with it many devastating storms that have affected many parts of our country. One area that was hit especially hard was the Virgin Islands. Although the storm itself is gone, these areas still need help to recover. Jordan-Small Middle School in Raymond is offering that help by “adopting” the Julius E. Sprauve School on the island of St. John in the United States Virgin Islands. 
The Sprauve school is home to 350 students, grades K-8.  During Hurricane Irma, the Sprauve School was heavily damaged. The damages worsened when Hurricane Maria passed through the island a week later. The school was so damaged, that the students had to miss over a month of classes while the school made repairs. As of today, the school has reopened but the students must do split sessions, as parts of the school still remain unusable. Of the damages, many if not all of the school supplies were destroyed.

https://www.facebook.com/Hole-in-the-Wall-Studioworks-287969967880120/?fref=tsRandy Crockett, Principal at Jordan Small Middle School along with Kelly Crockett and another colleague wanted to find a way to help. Having visited St. John on several occasions, Randy and Kelly Crockett had a personal interest in helping. “We wanted [to] find a way to let the staff at the Sprauve School know that people are aware of their needs; that they had not been forgotten,” Crockett said. 

After some work, the Jordan-Small Middle School Guidance Counselor was able to connect with someone at the Sprauve School to get the process going to adopt the school and help supply the school with much needed materials and supplies for the students. “Our goal is to have a box of supplies with notes from our students [delivered] to each of the classrooms at the Sprauve School before the holidays,” Crockett said.

Each year, Jordan-Small works on community service activities, and this year adopting the Sprauve
Sprauve School after hurricane damage
School is going to be the main event. The fifth graders at Jordan-Small are going to be at the heart of the project. The students have already made signs to promote the adoption of the school and they will play an integral part in sorting the supplies donated.  

As mentioned, the goal for Jordan-Small is to have a box of supplies delivered to each classroom before the holidays. The biggest struggle they are currently facing is getting these supplies to the Sprauve School.  

As of right now, they must choose between a very costly delivery or a very long delivery time.  The staff at Jordan-Small is looking for suggestions that will make the shipping of these supplies get to the staff and students in a timely, cost effective manner.

Jordan-Small Middle School will be accepting donated supplies as well as monetary donations through December 8th. Items to be donated can be brought directly to the Jordan-Small Middle School.  

Monetary donations should be made payable to the Raymond PTO and mailed directly to the Middle School at 423 Webbs Mills Road, Raymond, ME.  

If you have any questions on the items needed, please email Randy Crockett directly at rcrockett@rsu14.org.  

https://www.egcu.org/loansThere will be another opportunity to donate in the future through Raymond Elementary School in January.  “It’s all geared toward the kids,” Crockett states. “We want to make sure that Sprauve School knows that they have not been forgotten.”