Mad About Madeline Facebook page helped family cope with daughter's fatal leukemia
East Lyme — When Amie Warren Guarraia shared news of the death of her 9-year-old daughter Madeline on Facebook on April 6, the message reached 926,733 people.
"Today is one of those days that it doesn't make sense to us how this world is still spinning. With the deepest sadness imaginable, and shattered hearts, our family would like to share that Madeline earned her angel wings early this morning," she said, in perhaps the most difficult of hundreds of updates, many of them moving passages, that she shared with followers.
For about 15 months, Guarraia chronicled her oldest child's second bout with leukemia on Mad About Madeline, a Facebook page followed by more than 30,000 people.
"It was definitely a post that I didn't want to write and I remember telling (her husband) Matt, 'Oh, I don't want to write this one,' and I waited a long time to," she said.
Now, more than three months after Madeline's death, Guarraia, 37, continues to post on the page about how her family is dealing with grief, childhood cancer and remembrances of Madeline, and is considering writing a book based on her posts.
"A parent's worst fear is that people are going to stop talking about their child, so I'm not going to let that happen," she said.
Initially, she didn't plan to share so many details of her daughter's illness with strangers.
When Madeline was first diagnosed at age 4 with acute lymphoblastic leukemia in June 2011, Guarraia posted updates for family and friends on her personal Facebook page, and later on CaringBridge.org, a website for personal health journals, explaining that was easier than calling or texting individually.
But after beating the disease and being cancer-free and released from treatment for more than a year, Madeline was diagnosed in December 2014 with acute myloid leukemia, a second cancer that had been caused by the chemotherapy used to wipe out the first.
"I was just so angry, and I thought, if we are going to go through this again, I wanted everyone to go through it with us," said Guarraia, who was raised in Madison.
The Guarraias are among a group of parents who have detailed their children's medical battles on social media, among the most notable of which in this area is the case of Dorian Murray in Westerly, whose Praying for Dorian Facebook page attracted 127,351 followers by the time of his death at age 8 in March.
The public seems both hungry for and supportive of these efforts, and the social media posts help to garner support for the children and their families.
The Waterford-East Lyme community organized myriad fundraisers and raised large sums of money, allowing Amie to leave her job as an Oswegatchie School kindergarten teacher to be with Madeline full time.
When Madeline was diagnosed with the second leukemia, Carrie Swift Pope, the mother of a student at the Quaker Hill School where Matt Guarraia is a teacher, suggested a more public forum to share information.
Pope, with support from teacher Sara Egan, started the Facebook page on Dec. 9, 2014, and gave it the name of a 2011 fundraiser hosted to benefit the family: Mad About Madeline.
They asked the Guarraias for approval to launch the page.
"I said yes because I knew everybody cared and everybody was contacting us," Amie Guarraia said. "And I thought, this time I wasn't going to be quiet about it."
"I said, 'I need everyone to see what this really is. So this time I'm going to share it all, and I'm not going to hide it because I think the first time I didn't share very much and nobody really saw what childhood cancer really looks like. And if this is given to us again, it must be for a reason, and I have to let the world see what this really is,'" she said.
'You are not alone'
Originally, Pope or Egan would copy status updates and photos off Guarraia's Facebook page and paste them onto Mad About Madeline, but within a few months, Guarraia decided to author the page herself.
"At first I thought, let's just spread this word, but then it became very therapeutic for me, too, and I started posting a lot and it became something that I wanted to do," she said.
On days when it was too overwhelming, she wouldn't post at all. She would wait until a crisis had passed, and she'd had time to reflect on it before writing.
"The priority was always Madeline, but there were many times when Madeline just needed to sit there and have a break ... and that was my outlet," said Guarraia, who typed all of her posts on her cellphone.
"When you are going through something like we went through you feel alone, and it helps to know you are not alone," she said. "You spend a lot of time in a tiny room by yourself, and it is terrible. So having 5,000 hugs or 5,000 likes, it lets you know that those people care at that moment and it does help in some strange way through technology."
Husband Matt Guarraia, who supported her public posts, said sometimes he believed she was portraying too rosy a picture, making Madeline's leukemia look "like a cakewalk."
"But, oh, it was very therapeutic for her, and just that alone was great," he said. "And I loved that people were mentioning Madeline's name. I loved someone stopping me and having a conversation about Madeline. I loved being stopped in Wal-Mart by somebody, random strangers I didn't know but who knew me from Mad About Madeline."
Over the months, Amie Guarraia gave updates on Madeline's condition, her treatments, and how the family was coping.
There were upbeat posts when Madeline was feeling strong and was at home with her friends and siblings, and sad missives when she was sick, blinded by the drugs that were trying to cure her, and frustrated by her illness.
Some posts were heart-wrenching, like the one about an overheard conversation between Madeline and friends about how the 9-year-old was sorrowful that she would likely not live to see 10.
On Facebook, Guarraia promoted awareness of childhood cancer and the issues surrounding it, and educated followers about things like cord blood, platelets and bone marrow transplants.
When the cancer came back after Madeline's initially successful marrow transplant from baby brother Anthony and a subsequent experimental drug therapy failed, she acknowledged to the 30,000 followers that hospice had been called in.
The sorrow expressed on Facebook was palpable.
Just like the Guarraias, who rushed Halloween and Christmas in 2015 in an effort to have two more holidays with Madeline, readers felt the seesaw swing of the family when in late December, the little girl rebounded and hospice was sent away.
Amie Guarraia shared it all on Facebook, with many posts garnering thousands of reactions and shares.
The update the day that Madeline died prompted 21,000 reactions and was shared by 5,496 followers.
Egan, the teacher who helped start the page, said typical posts on Mad About Madeline reached 75,000 to 200,000 people, and photographs, as many as 250,000.
"Amie just wanted everyone to know what an incredible kid that Madeline was, and she did an incredible job of it and inspired a lot of people," Egan said. "She was really honest and brave and intuitive about what Madeline was going through."
So many gifts
The family was deeply moved by the outpouring of support, from help paying their mortgage to money for gasoline for their vehicles.
Businesses and individuals stepped up to do things like mow their lawn, plow their driveway, rewire their home, and build a backyard playscape. One restaurant made rolls for Madeline in a sterile environment to guard against germs. Another would send the Guarraias home with bags of frozen ham cubes, which Madeline enjoyed, when they learned she wasn't allowed to eat from a salad bar.
The Guarraias said so many people did so many kind and generous things — much of it a result of the Facebook page — that they were reluctant to name them for fear of missing some. But Matt Guarraia keeps a list of the contributors and acts of kindness on his cellphone.
"What (the cash contributions) did was allow us to continue to live," Amie Guarraia said. "Not extravagantly, but we didn't go bankrupt and we didn't have to sell our house."
When Madeline was first diagnosed, she said, "Here's what they tell you: First you will lose your house and then you'll lose your marriage ... We heard it over and over again."
"And we were like, 'OK, we don't care about the house, but we will work really hard on the marriage part.' And the fact that we didn't have to worry very hard about losing the house, that was a huge stress relief," she said.
The couple are now doing what they can to help other families.
Amie Guarraia plans to return to work as a third-grade teacher at the Oswegatchie School at the end of summer break and plans to continue to write about Madeline.
Friends have encouraged her to write a book and she's considering that.
"I always wanted it to be about Madeline and not about how I was coping as a mom. And that's where I found my strength," she said. "It was coming from Madeline."
Each member of the family grieves in their own way, but they are moving forward.
"We are doing better than I thought we would in that we are still functioning," she said. "I didn't think I'd ever be able to function, but I find that we are getting up every day, we are actually doing stuff, and we are functioning and smiling every day."
"We are crying every day, too," she added. "But not so much that it keeps us from living, which is what Madeline would have wanted."