Mattie Long's 3rd Brain Surgery

Anyone who has ever met Mattie knows, without a doubt, she is one of the kindest and most caring people they have ever met. Mattie is the type of person who lights up any room that she walks into. Her smile is so contagious that she'd even have Ebenezer Scrooge smiling; second only to her equally as infectious laughter. I have watched Mattie stop everything she was doing to help a stranger simply because that person was in need. I've seen her at her lowest of lows and watched in awe as she still found reasons to smile and laugh. And this is only just the smallest spinet of the incredible young woman that Mattie is.

At the age of 16, Mattie was diagnosed with a benign brain tumor. Unfortunately, the tumor sits directly on top of her brain stem making it inoperable. Shortly after this diagnosis, Mattie decided to name her tumor, Flubber; a gesture that is decidedly very “Mattie” for anyone who knows her.

The tumor was blocking a ventricle, causing her brain to swell with fluid. She underwent emergency brain surgery on Christmas Eve of 2011 at Boston Children's Hospital to relieve the pressure. (Endoscopic Third Ventriculostomy)

Throughout that first year of diagnosis, Mattie would undergo four MRI's to monitor the tumor and with each new scan the results showed slow, but steady growth.

In 2013, Mattie's symptoms returned, but her scans seemed normal, with no signs of Hydrocephalus (water on the brain). She would have periods of relative good health, only to worsen at the drop of a hat with no obvious factors. Mattie's neurosurgeon, the incredible Dr. Goumnerova, decided it was time to perform an exploratory surgery so as to give her a better idea of what was going on inside. Dr. Goumnerova would discover that the initial hole she had made in Mattie's Third Ventricle had created scar tissue in the form of a flap. It would flap closed, causing her brain to swell, then open back up, causing relief. Her neurosurgeon performed the same surgery from 2011, to clear the scar tissue.

Sadly, just over a year later, after more MRIs, Mattie and her family received the news they had been dreading. Mattie needed chemotherapy. Although studies have shown that Mattie's type of tumor stops growing on it's own, usually early to mid twenties, her doctor's weren't comfortable with just letting it grow, and knew that they had to intervene.


She started her chemotherapy journey at the Jimmy Fund Clinic at Dana Farber Cancer Institute in Boston, in October of 2014. After two separate treatments, and twenty rounds total, Mattie finished in May of 2016, just four days before her 21st birthday. Everyone was so excited for this whole ordeal to finally be over.

Unexpectedly, a few weeks ago, Mattie's original symptoms returned. After ignoring the headache for several days, she became concerned when Tylenol/decongestants weren't working, and she started to experience neck pain, insomnia, blurry vision, and nausea. After over a week, she decided to go to the doctor.

Mattie went to Falmouth ER where she was transported via ambulance to Boston Children's Hospital. She had two MRIs, that appeared to come back normal. However, after a few days of not responding to pain medicine, and having textbook symptoms of Hydrocephalus (fluid on the brain) her neurosurgeon decided to try steroids, saying that if it helped, it was a clear indication there was swelling in her brain. Thankfully, the steroids helped.

Her neurosurgeon also said that she compared her MRIs from when she was first diagnosed (2011), when she finished chemo (2016), and this year (2018) and saw that her tumor was still, slowly growing. It was growing close to her Third Ventricle, and if it were to grow into it, the only option at that point, would be implanting a shunt, to drain the fluid. A shunt is not something her neurosurgeon wants to do, as the maintenance would require more surgeries in the future. This would be a risky option as her tumor is in a hard to reach area.

Instead, her doctor wants to attempt to remove the section of the tumor that has gotten close to that Third Ventricle. Dr. G thinks she can remove about 40%-50% of Mattie's tumor. She is unable to remove the entire tumor, as it rest sits on top of her brain stem, making it extremely dangerous to remove.


There is so much unknown for Mattie and her family right now. They won't know the details, or intensity of the surgery, or even recovery, until her appointment on 8 March 2018, as her neurosurgeon is traveling abroad for conferences most of February. All this is known at this current time is that this surgery will be more in-depth than any of the others and fear the recovery will be much like her first surgery which was long and arduous.

Right now, Mattie is currently unable to work. While the steroids are helping to reduce the brain swelling, the side effects have her nearly bed ridden. Baring all of this in mind, a few of Mattie's friends have decided to start this GoFundMe in the hopes that, however slight, we can help to alleviate some of the pressure Mattie and her family face financially. Anything you can give will be met with the utmost gratitude and thankfulness. Thank you so much for taking the time to read about Mattie's story.

Donations

  • Noelle & Sophie Nelson 
    • $26 
    • 26 mos
  • Claudia Nelson 
    • $100 
    • 26 mos
  • Anonymous 
    • $50 
    • 26 mos
  • Erin Lally 
    • $50 
    • 26 mos
  • Marianna and John Scarpellini 
    • $100 
    • 26 mos
See all

Organizer and beneficiary

Aryana Weathers 
Organizer
East Falmouth, MA
Mattie Long 
Beneficiary
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