News

NY Yankees Manager Joe Girardi
Recognizes the Lily LaRue Foundation


Joe Girardi

Follow Below to View the Video


Love for Lily Golf Outing



At the age of five Lily LaRue Anderson was diagnosed with Diffuse Intrinsic Pontine Glioma, commonly referred to as DIPG, on May 3, 2014. She battled with her “Boo-Boo” for 11 months, during which time she touched the lives of thousands from all over the world who came together to support Lily and the Anderson family. Despite enduring a daily pill regimen, weekly blood draws, and everything else that came with it, Lily never stopped enjoying her love of comedy, animals, music, and life itself. Through it all Lily continued to bring smiles to the faces of everyone she met.  Lily lost her battle with DIPG on April 6, 2015, but we continue the fight in her name by supportiing the Lily LaRue Foundation by way of the second annual Love for Lily golf outing!

The Lily LaRue Foundation, a 501c3 charity, is dedicated to helping other children and families afflicted with this cruel disease. The Foundation's mission is to increase awareness of DIPG, raise funds for research to eradicate DIPG, and to help children and families who are battling DIPG and other pediatric cancers.  As Lily would have said we will raise awarness of DIPG using our “Yelly Voices”! 

The money raised form generous folks like you who are participating in and sponsoring the golf outing is crucial because of how underfunded pediatric cancer research really is.  There are over 20 different pediatric cancers including DIPG. These 20 plus cancers receive 4% of the total funds dedicated to cancer research each year, while pancreatic cancer alone receives the same 4%.  This isn't to stay that any one cancer is more or less important than another, but it does illustrate the need to increase the awarness of and funding for DIPG.

For DINNER ONLY please click below:

Location:
Emerson Golf Club
99 Palisade Ave
Emerson, NJ 07630
click here to view map

Date: 7/14/2017

Time: 11:30 AM

Price: $200 per golfer, $65 for dinner only

Includes:

The price of the Love for Lily Golf Outing includes lunch, greens fees, a Love for Lily inscribed souvenir items, access to the putting green and driving range, unlimited beer during the entire event, cocktail hour with hors d' oeuvres on the veranda featuring live entertainment, and a great dinner including several savory dishes and a carving station!

Format:

We will enjoy a shot gun start at 12:30 and play "best ball" so we can maintain a brisk pace of play in order to commence with cocktail hour in a timely fashion!

Contests and Prizes:

Details to follow...In the meantime if you would like to donate a raffle prize package or item please contact Glenn Carlough by way of gcarlough@gmail.com.

Event Day Registration:

Registration will begin at 11:00 am with lunch to follow starting at 11:30. Just look for the pink fire engine and the pink bus and you'll know you're in the right place. If you are interested in volunteering to help with the outing please contact Glenn Carlough by way of gcarlough@gmail.com or Brian Anderson at hendu213@yahoo.com you can also call Brian at 862-221-8710, Your good deed will be rewarded with food and drink!

Sponsorship Opportunities:

Numerous sponsorship packages are available to support this event and advertise for your company! Please click on the sponsor/dinner package tab for more information.

Click here to order sponsor packages

Outing Notes:

If you can't join us for golf, that doesn't mean you can't join us! Dinner tickets are sold separately for $65 by clicking on the sponsor/dinner package tab. If you buy a dinner ticket you are also welcome at Cocktail Hour which gets under way at 6:00 pm on the veranda. If you are interested in volunteering to help with the outing please contact Glenn Carlough by way of gcarlough@gmail.com. Your good deed will be rewarded with food and drink!

To Register for the Event, Follow here


The Faces of DIPG: Lily LaRue Anderson



I never met Lily LaRue Anderson, but I appreciate her silliness, humor, strength, and charisma left behind through videos and stories.

In one video, Lily’s mom, Barbara, introduces Lily and asks her how she is. The strained reply that she is “good” and her answer that what she wants is her “boo-boo gone” will rip your heart out, without a doubt, but the personality that follows will make your day if you let it.

When Lily is asked what else she wants, her first answer is a pig. Then she continues into a laundry list that is positively hysterical.

On Lily’s wish list:

  • A hot tub
  • A jeep
  • A pet goat
  • A pet lamb
  • A farm (a real farm with all the animals)

The Little Twerker

Another fantastic video featuring Lily was sent to mom, Barbara, from one of her doctors. Kids with Diffuse Intrinsic Pontine Glioma, or DIPG, are subject to regular physicals to assess the progress of the disease.

Well, Lily got creative with hers, “twerking” for her doctors and singing, “Let it burn” to the tune of, “Let it go” in the movie, Frozen.

“She said she had saved a video of Lily twerking for them and then she had everybody else doing it,” said Barbara of Lily’s ability to have fun through the pain. “That was her. She was just amazing through everything.”

Pet Therapy

As you probably guessed from her aforementioned wish list, Lily was also passionate about animals. During one of her treatments, the hospital staff informed her that they “had a surprise,” which included therapy guinea pigs for her to play with.

Lily, who had lost her ability to walk after her tumor was biopsied, regained that ability and went on to pull the guinea pigs around the hospital in a wagon.

“It was only because of those guinea pigs – it was crazy to me,” said Barbara. “What are the chances of having therapy guinea pigs? But that was her focus. She would have been an amazing animal activist. She was already born one.”

Lily LaRue Anderson DIPG

Just a few weeks before she passed away, Lily asked if she could milk a cow, so her family found the only dairy farm open in the area and took her to milk the cow in the middle of winter.

“We literally carried her in,” said Barbara. “Little did we know, New Jersey only has one dairy farm that’s open all the time, but friends of ours found it and let us come.”

How They’re Coping

Lily LaRue Anderson DIPG

Lily and Brady.

Lily passed away on April 6, 2015, so the Anderson family is still experiencing their year of firsts without her.

“We survived December,” said Barbara. “I didn’t that I would. I honestly didn’t think that I would, but we did.”

Barbara and her husband, Brian, and their three surviving children — one of whom is Lily’s twin brother — are making it through by “trying” every single day.

“That’s all we can do,” said Barbara. “Some days are better than others, of course.”

One way that Barbara and Brian have coped with grief is by reaching out to other parents reeling from the pain of losing a child.

“It has helped tremendously,” said Barbara. “My husband has spoken to so many other dads and other families that have not only dealt with DIPG, but maybe their children died from other cancers.

“With me, I just talk to families that I know and even if I say just one thing that stays with them, then it’s a gift. Maybe it’s just one little light in their dark, but there’s a lot of dark. If you laugh a little bit more than you cry, then it’s a good day.”

Yelly Voice

What has become the staple of Team Lily LaRue is the “Yelly voice.” When Barbara was explaining to Lily what was happening with her tumor, she phrased it using language Lily could understand.

“I told her, ’Your boo-boo’s not listening.’” said Barbara, “I said, ‘I’m not sure what’s going on.’ So she said, ’Well, maybe we need to use a ‘Yelly voice’ and it’ll listen.’”

So speaking in a “Yelly voice” in the name of DIPG research became the way to do things for Team Lily LaRue.

Use Your Yelly Voice

Help all of the families fighting this battle with DIPG and vote for Coach Beilein to win $100,000 for ChadTough.

Barbara, Brian and their family hope that you will use your “Yelly voice” in the name of DIPG research. Spread the word to friends, family, and acquaintances that we need to find a cure for DIPG.

“Things have to change,” said Barbara. “I mean, if you think about it, Leukemia wasn’t curable 10 years ago. It was still a death sentence.

“Now it still in certain cases, but the survival rate is around 80-percent. Why? Because they focused on it. They focused on the biology and they found treatment options.

“We need to do the same for DIPG.”

You can use your “Yelly voice” to support Team Lily LaRue by visiting their site on PayPal.


Wayne 6-year-old dies from brain cancer; girl's parents turn grief into gift for research


Lily LaRue Anderson rests on her father Brian's shoulder after a fundraiser held in Garfield for four North Jersey sick children earlier this year.

Lily LaRue Anderson loved animals, roller coasters, music, dancing, Disney and unicorns. Her biggest smile was not all teeth but all tonsils — an open-mouthed grin of pure joy and amazement.

The Wayne first-grader died Monday at age 6 from an inoperable brain tumor.

Lily LaRue Anderson rests on her father Brian's shoulder after a fundraiser held in Garfield for four North Jersey sick children earlier this year. Lily LaRue Anderson in a photo posted on Facebook in September 2014.

“She was more than just a child that went to this school,” said Susan Wardell, the principal at Ryerson Elementary School. “We really are a little family here. Lily had a light and energy and happiness.”

Lily was found to have diffuse intrinsic pontine glioma (DIPG) last May. Since then, Lily’s parents Barbara and Brian Anderson not only fought for the best care for Lily, they learned about the lack of progress in fighting the cancer. They were introduced to other DIPG families, and often grieved with them when their children lost the battle. Now, the Andersons want to help those who face this diagnosis in the future. They have donated Lily’s tumor to Stanford University.

“I didn’t want to feel that Lily’s suffering over the last 11 months was for nothing,” Brian Anderson said Tuesday. “If her tumor can help any kid with DIPG in the future, can help find a cure. … Nothing’s worth losing your child, but obviously it would mean something if her tumor led to a cure.”

Dr. Michelle Monje’s research team was the recipient of the glioma.

“I’m astounded by a family like Lily’s family who are thinking about future families at this unthinkable moment in their lives,” said Monje, an assistant professor of neurology and pediatrics at Stanford. “It’s so generous.”

It’s also “invaluable” toward understanding Lily’s kind of tumor, finding better treatments and eventually a cure, Monje said. Because of the diffuse nature of the tumor in the brain tissue and a lack of research facilities attempting to make the cultures, samples of these gliomas are rare. Monje’s team will use Lily’s tumor tissue to produce cultures that can be studied to test new therapy and to “learn about what makes the tumor tick,” Monje said.

Donating the tumor was something Brian Anderson had thought about since Lily’s diagnosis. The family chose Monje because she shares her cultures and findings with other research teams around the world.

“She’s all about curing DIPG,” Anderson said.

With no prior relationship, the Andersons reached out to her.

“That’s really remarkable,” Monje said.

Lily leaves behind the legions of members of what became known as TeamLilyLaRue, her and her family’s support system and wish-granters since last May.

In addition to the staff and students at Ryerson — Lily’s mother and her aunts attended the school, and her twin brother is a first-grader — that team includes the Wayne Hills High School girls soccer team, the men’s and women’s lacrosse teams at Stevens Institute of Technology, the congregation at Our Lady of the Valley Church, friends at Davey’s Irish Pub and Restaurant in Montvale, and people of Better Homes and Gardens Rand Realty in Ridgefield. Friends, family and strangers became part of the Andersons’ personal mission. They followed her fight on the Facebook page her family created and frequently updated with her progress and adventures.

“Her family is grateful beyond words for the love bestowed upon Lily through all of your letters, gifts, notes, art, efforts, prayers, donations and random acts of kindness,” Lily’s page on the Vander May Funeral Home website said. “Everyone on #TeamLilyLaRue has been absolutely beautiful.”

During Lily’s illness, the school tried to help the Andersons by conducting fundraisers and sending messages, cards and artwork to Lily when she wasn’t well enough to attend school.

“We always felt we were supporting them,” Wardell said, “but in the end, they wound up supporting us through our difficulty and grief. They helped us. They made us better people.”

After her diagnosis, Lily graduated from kindergarten, was a flower girl, went to the circus, went on a cruise and took a trip to Hawaii with her family. She met and loved every therapy animal that came her way, from guinea pigs to dogs. In the last few months, Lily milked a cow, went to the American Girl store, was a model at a fashion show, flew in a New Jersey State Police helicopter and got slimed by Nickelodeon. She asked for — and got — a rainbow mohawk before embarking on a new treatment. She received her first Holy Communion and was confirmed.

Her mother, Barbara, occasionally wrote a blog chronicling the family’s battle, her latest entry coming on April 1.

“March was absolutely filled with stellar and amazing *amazing* firsts and dreams,” she wrote. “The gifts and outpouring of love have been life altering and beautiful. The kind of beauty that stuns one silent; in reverence.”

Her family’s stories describe a girl who loved to dance, sing, eat french fries, drink milkshakes and cause a little trouble with her twin brother every now and again. But she was also beyond her years in many ways. She would cry over the beauty of a love song, new baby or the perfect gift that arrived just as she had imagined it, according to her mother.

Lily is survived by her parents, Barbara and Brian Anderson, her twin brother Brady, older sister Jasmine and older brother Daniel; her grandparents Sophia and Eugeniusz Zak of Boca Raton, Fla., and Garry and Sue Anderson of Paramus; great-grandfather Paul Anderson; four aunts, Alicia Mustain and her husband, Blake, of Boca Raton, Gena Zak of Washington, D.C., Alexandra Zak of Washington, D.C., Christina Zak of Wayne; and one uncle, Eric Anderson, and his wife, Marlaina, of Paramus and Barnegat; and three cousins, Madison Mustain of Boca Raton, and Brandon and Hailey Anderson of Barnegat.

Friends may visit with the family at the Vander May Wayne Colonial Funeral Home, 567 Ratzer Road, Wayne, from 3 to 8 p.m. Thursday. A funeral Mass will be said at 10:30 a.m. Friday at Our Lady of the Valley Roman Catholic Church, Wayne.

The family asks that donations in Lily’s memory be made to the Lily LaRue Foundation, 908 13th Street SE, Washington, DC 20003. The foundation’s mission is to help families fighting DIPG and to donate toward research.


Six-year-old Wayne parishioner with inoperable brain tumor receives First Communion and Confirmation


Six-year-old Wayne parishioner with inoperable brain tumor receives First Communion and Confirmation RECEIVING THE SACRAMENTS  Lily LaRue Peregrine Anderson receives the Sacrament of Confirmation in her home March 17. She also received her First Holy Communion that day. Both sacraments were administered by Father ST Sutton, administrator of Our Lady of the Valley and Holy Cross parishes, both in Wayne. The six-year-old was diagnosed with an inoperable brain tumor last May.
DENVILLE  For the Anderson family, parishioners of Our Lady of the Valley (OLV) Parish here, St. Peregrine is an important part of their prayer life since he is the patron saint for healing those afflicted by cancer.

So it was easy for the family to chose the name Peregrine as the Confirmation name for their ailing 6-year-old daughter, Lily LaRue, who was diagnosed with an inoperable brain tumor known as Diffuse Intrinsic Pontine Glioma (DIPG) last May.

Because this rare type of childhood cancer is very aggressive, Bishop Serratelli presented the idea and gave permission for Lily to receive the Sacraments of Confirmation and First Holy Communion. Father ST Sutton, administrator of OLV and Holy Cross Parish here, celebrated Mass and administered the two life-giving sacraments to Lily in her home, surrounded by her family on St. Patrick’s Day.

“It was truly an honor and privilege to have welcomed Lily LaRue Peregrine into the fullness of the Catholic Church the morning of St. Patrick’s Day, which also happens to be the 15th wedding anniversary of her parents, Barbara and Brian,” said Father Sutton.

It has been a difficult time for the Anderson family since Lily’s diagnosis. The family also consists of Lily’s twin brother, Brady, and an older sister, Jasmine.

“A couple of weeks ago I went to visit the family to anoint Lily, who had lost the ability to move her neck. I prayed and sat with her mother. She told me about the family’s struggles,” said Father Sutton.

Recently, a St. Patrick’s dinner-dance was held March 14 hosted by OLV Knights of Columbus Council 6354 with parishioners from OLV and Holy Cross supporting the cause. Jim DeLuccia, grand knight of the council, who was also present at Lily’s reception of her sacraments, said, “As of now there’s no cure for Lily’s cancer so it’s important that we’ve come together for this family facing a difficult time. The parishioners have been so generous to the family.”

Because cancer is so rare, Lily has been receiving treatment at specialized children’s hospitals in Philadelphia and Washington, D.C. With Lily’s cancer, it is impossible to remove the tumor where it is located in her brain and the cause is unknown.

Right now, the family is letting Lily enjoy life as she fulfills wishes she made on her wish list. The family describes her as smart, funny and a lover of life. She won her first poetry essay at 5 and she’s an animal lover. She loves taking photos, making videos, dancing and doing silly impressions.

Read More about Lily LaRue Adnerson Receives First Communion


Angel gone to Heaven: Lily LaRue Anderson, 6



TRIBUTE: Not expected to make it to last Christmas, a bubbly Wayne girl who won countless hearts of those who learned of her inoperable brain tumor passed this morning, a day after Easter.

Lily LaRue Anderson was 6.

With no prior signs, Lily was diagnosed last May with diffuse intrinsic pontine glioma (DIPG).

Lily (family photos)

The tumor sat in the middle of her brain stem — which holds the “wiring” for motor control and sensation — and couldn’t be removed.

It’s a particularly cruel disease: The median overall survival term is 9 months.

Lily lasted 11.

In that time, she and her family made a deep impression on many.

* * * * * *

A funeral Mass is set for 10:30 a.m. Friday at Our Lady of the Valley RC Church, Wayne, following 9:30 a.m. services the Vander May Wayne Colonial Funeral Home, 567 Ratzer Road, Wayne. Visiting hours: 3-8 p.m. Thursday.

* * * * * *

Sports stars, celebrities and people of all stripes rallied to help Lily and her family (You can, too. Go to: GoFundMe For Lily ).

The Shriners Circus brought them in as special guests, thanks to some very caring peole who’d leaned of her illness barely 48 hours earlier. READ MORE ….

At the circus

Lily’s mom, Barbara Anderson, kept a blog diary, of sorts. You can read the March entry, and others, here :#TEAMLILYLARUE DIPG

At 5, Lily had won a poetry contest. One of twins, she loved taking photos, making videos, doing impressions, telling jokes.

She loves animals — “chihuahuas, unicorns, owls, monkeys, and even worms,” her parents wrote on a Facebook page: Hope for Lily LaRue Anderson .

“Lily is always ready to show you a new trick, tell you a joke, and sing you a song. You are guaranteed a good laugh and big smile.

“She loves to entertain all ages and she is bright star to her entire family and friends. She is loved by so many, especially her aunts, uncles, many cousins, and grandparents.”


Wayne Community Puts Together Christmas Light Display For Young Girl Battling Brain Tumor


 Wayne Community Puts Together Christmas Light Display For Young Girl Battling Brain Tumor

A community in Wayne is hoping that Christmas lights will lift the spirits of a young girl who has spent more days in the hospital than in school.

Lily LaRue Anderson, 6, is ready for Christmas. Her home in Wayne is the brightest on the block.

She said the Christmas lights make her feel special and after so many weeks in the hospital special is what she deserves.

All she wants for Christmas?

“My boo boo gone,” she told CBS2’s Matt Kozar.

Lily’s ‘boo boo’ as she calls it is a tumor in her brain stem. Doctors say it’s inoperable and terminal.

“At one point, she was up to 25 to 30 pills a day,” her mother Barbara Anderson.

Barbara and her husband Brian say Lily is in pain and has eye problems from paralysis. Doctors gave her three to six months. That was seven months ago, and the 6-year-old is going strong, playing with her twin brother and older sister.

“That’s our goal, to keep Lily’s tumor dormant, to deactivate if if you will,” Barbara said.

Traveling back and forth the National Cancer Institute in Maryland didn’t give the Andersons much time to put up Christmas lights.

Neighbor Craig Tkaczenko, who owns a Christmas decorating company, volunteered to do it for them.

“I hope it means that she can enjoy Christmas this year and make it as bright as we can for her,” he said.

In this season of hope and second chances one little girl is hoping Santa makes her wish come true.