Four-year-old Adalynn Madsen found out three weeks ago that she has a rare form of Leukemia that affects only four out of one million people. On Tuesday she started chemotherapy with her mother Jessica (Jess) by her side at Dana Farber in Boston.
The three week journey has been a whirlwind for the Madsens, Addy, her mom Jessica, her dad David and her 7-year-old big sister Casidhe. After constantly being sick and not feeling well, David demanded that they draw blood at her doctor’s office.
|Addy in the purple dress with her family.|
“When they were walking up the driveway [Addy] needed to be carried. Her scrapes and bug bites (like all children are covered with) weren't healing. Addy would turn down a challenge to race from her little cousin (if you know Addy, that's a pretty big deal). Addy's spunk just didn't seem to be there,” said family friend Leigh-Anne Fortin.
The next day, the Madsens were sent to Maine Medical Center in Portland and were met with an oncology team.
Addy has MDS (myelodysplastic syndrome) and will require a bone marrow transplant. The final decision at MMC was to send Addy to Boston for treatment. According to Addy’s aunt, Anne Manning, Maine Medical Center hadn’t seen very many, if any, cases of MDS. They conferred with doctors from all of the US and in Europe to help get the correct diagnosis, Manning said.
Addy and her mother will live in the hospital for six months and then when Addy comes home, she will have to stay in her home in Raymond for another six months while she’s recovering.
Addy has had two bone marrow draws and will need to find a donor that matches her bone marrow which will cost between $10,000 and $15,000, which insurance will not cover. Jess is a school teacher in Poland and she has taken a leave of absence without pay to be with her daughter. David works for the Town of Lewiston and will continue to work except on Fridays when he and Casidhe will travel down to visit Addy and Jess.
“We are all in it together,” said Manning. David and Casidhe will live with Manning and her husband while Addy is receiving treatment to make transportation and other care easier on the family.
Addy is a fun loving 4-year-old who loves to swim, and go frogging with her cousin. In a recent video after receiving a transfusion she had enough energy to dance to Taylor Swift’s song “Shake It Off”, which then became a theme song of sorts for her. Bracelets have been made that say “#Shakeoffcancer” and “Super Hero Addy.”
“It’s such a heartfelt thing,” said Manning. “All of the wishes, thoughts and prayers give her super powers. The community matters.”
On August 15th, there will be a fundraiser at Point Sebago in Casco. The family rented out a room for music, dancing, cocktails, appetizers and auctions. All money raised will go directly to the medical and incurred costs for Super Hero Addy’s treatment. Tickets can be purchased online through Eventbrite at https://www.eventbrite.com/e/super-hero-addy-night-tickets-17753551350?ref=esfb. Donations can also be made through a GoFund me page http://www.gofundme.com/9sf734d9s
“Your donation is to help her family while Addy shows cancer who is boss. You will help with the costs of treatments, the costs for things not covered by insurance, to replace the carpet in the house when Addy comes home, and to also help the family while Jess is in Boston with Addy,” said Fortin on the GoFund me page.
To follow Addy’s story visit the Super Hero Addy Facebook page. To send messages, email email@example.com or call Anne at 650-0582.