Five days. That’s all the Musto family had with Madeline after a doctor found a diffuse intrinsic pontine glioma (DIPG) on her brain stem. Five days.
Diagnosed on February 3, 2012, Madeline passed away on February 8, 2012.
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“There is a before DIPG and an after,” says Erin. “I miss being blissfully unaware that children die, that children get brain tumors, that the world could shatter in a moment.”
Madeline – or “Maddie” for short – was a happy, energetic, and loving five-year-old. She had recently started kindergarten and quickly made lots of friends as she reveled in riding the bus, eating lunch, and running around the playground with her classmates. At home, Maddie was equally as vibrant. She cherished her role as a big sister to Amelia and Lucy and filled the Mustos’ world with joy and laughter.
“She used to run around the yard and tell me, ‘Mommy, I can run as fast as a cheetah!’” says Erin, Maddie’s mother.
The Mustos lived for trips to their cottage, visits with extended family, outings to museums, birthday parties, arts and crafts, dance parties, dress up, and, of course, princesses.
“Our world felt full and fun,” says Erin.
In stark contrast to how quickly life changed after she was ultimately diagnosed, the signs that something below the surface wasn’t quite right unfolded slowly and subtly throughout the fall and early winter of 2011. The red flags would only be clear in hindsight.
First, there was the smile. Nothing too dramatic, but Maddie’s smile suddenly looked a bit “funny” to Erin when she was taking photos of the three sisters.
“I would tell her, ‘Mads, smile bigger, beautibug,’ but I felt like she just couldn’t fix it,” says Erin.
Strange, but hardly alarm-raising.
The Mustos lived for trips to their cottage, visits with extended family, outings to museums, birthday parties, arts and crafts, dance parties, dress up, and, of course, princesses. “Our world felt full and fun,” says Erin.
Then came trouble at school. Maddie went from loving kindergarten when she first started in September to unable to make it through the day without breaking out in tears by December. But, it’s not uncommon for children to experience rough patches during their early experiences with school.
As December 2011 gave way to January 2012, Maddie had a few random bouts of vomiting – she’d get sick in the morning but then feel fine for the remainder of the day. Again, nothing too out-of-the-ordinary for young children. Maybe a bug.
At the end of January, however, Erin got a call from the school nurse. Maddie was feeling dizzy and wanted to go home.
“I picked her right up and [when we got home] she napped for hours,” recalls Erin. “When she woke up she was giggling because she was walking silly. I thought she may be dehydrated.”
Maddie did start feeling better with rest and water. But, though the next few days were much improved (in fact, Erin describes the intervening weekend as “amazing”), Maddie woke up a few days later and was unable to walk or use the left side of her body.
From that point, everything moved at warp-speed.
“Her doctor didn’t know what to do, so we went to [the hospital] and waited,” says Erin. “She had an MRI in the middle of the night and was put into a [room in the neurological unit]… We slept with her and waited for the prognosis. I hoped for a lack of iron or something fixable. But instead, I learned about pediatric palliative care and preparing for the end.”
The tumor was advanced and inoperable, tangled throughout Maddie’s fragile brainstem. Even had the tumor not been advanced, there are no treatment options for DIPG patients, just a devastating reality.
“[A] pediatric neurosurgeon said to us, ‘Enjoy this time now, you will have lots of time to grieve and be sad later,’ and we heard that,” says Erin. “We changed our mindset and worked to enjoy that time. We filled Madeline’s days with adventure. She made her first communion and confirmation, had an amazing photoshoot, a party, a new room redo with a slumber party for her and her cousins, and a family trip to Lake Placid.”
Erin notes how so many rallied around their family during that short period of time and “moved mountains” to give the Mustos and Maddie as much as possible in her final days on earth.
“In the five days we were granted, we accomplished many best moments, many best days ever,” says Erin.
After Maddie passed, Erin and her husband, Matthew, started a foundation called Maddie’s Mark as “our way of showing the world our Madeline and carrying on her beautiful legacy of love and kindness.” The goals of the foundation are a reflection of Madeline’s outlook on life, and its mission is to “spread Madeline’s spirit by providing opportunities, creating environments, and enabling children and families to live a life of ‘best days ever.’”
While the Mustos continue to carry on in honor of Maddie’s legacy, DIPG, perhaps the worst of all pediatric cancers, has forever changed Erin, Matthew, Amelia, and Lucy.
“There is a before DIPG and an after,” says Erin. “I miss being blissfully unaware that children die, that children get brain tumors, that the world could shatter in a moment. I miss being that woman… and I miss my lovely Madeline. I miss waking her up with, ‘Good morning sunshine, goooood morning Madeline,’ and her raspy giggle, her inability to wear a sock that isn’t on wrong, and her determination to learn to tie her shoes and read a book all by herself. I miss seeing her build up her sisters. I miss my pod of people. DIPG steals so much; I imagine if it wouldn’t have stolen her last breath and her heartbeat – her future as a grownup.”
The Mustos are creating change to last a lifetime this CCAM to give incredible children like Maddie many more years of ‘best days ever.’
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