PLGA News Center
Push for research, cures after Methuen girl is diagnosed with brain tumor
By Jill HarmacinskiStaff Writer - Eagle Tribune. June 17th, 2008.
METHUEN — In the picture on the kitchen wall, Caroline Hamilton is one of three small children, sitting on a beach, their backs to the camera, calmly watching the ocean.
That moment, captured on a Florida beach last year, "was the end of a perfect week in the midst of all this chaos," said Sarah (Previte) Hamilton, Caroline's mom.
Caroline Hamilton, 7, a first-grader with a great smile, has a plum-sized tumor lodged in her brain. The tumor is incurable and inoperable, and the child — for now — must undergo chemotherapy treatments to keep the tumor from growing.
The treatments, developed 25 years ago, are the child's best option to stay alive. But the Hamilton family finds that unacceptable. They are now pushing to find kinder and more effective treatments for children with brain tumors. Current options are akin to the era of "electric typewriters and Slimline phones on the kitchen wall," her mom said.
"We are giving her 1984's best," Sarah said. "We can do better for our children."
Last year, just two weeks after Caroline was diagnosed, the Dana-Farber Cancer Research Institute in Boston launched a special program to study childhood brain tumors. The program is the first of its kind committed to this type of tumor, medically categorized as a pediatric low-grade astrocytoma.
When the Hamiltons heard about the new program, they knew they had to get involved.
"We cannot stand on the sidelines. We must be involved in the fight," said Sarah.
Last year, the Hamiltons mobilized 79 Jimmy Fund walkers and raised nearly $50,000 for research. This year, they hope Team Chickaroo can do even better, all in the name of Caroline, who, as a baby, was affectionately nicknamed "Chickaroo" by her dad. A golf tournament is scheduled next month at Hickory Hill in Methuen. Sponsors are still needed.
Lives changed forever
Caroline's brain tumor was first diagnosed in early 2007, after the nurse at St. Michael School in North Andover, Linda Sullivan, noticed the girl struggled with a portion of her kindergarten vision test. Sarah and her husband, Rick, were somewhat concerned, as Caroline never complained about her vision and her teachers never mentioned any problems, either.
Then, in mid-April, as the family was vacationing in Longboat Key, Fla., Rick and Sarah both noticed a "jerking movement" in Caroline's left eye. Concerned, the couple vowed to have the problem checked out during an ophthalmology exam scheduled when they returned home.
But the ophthalmologist said Caroline's eyes were both healthy. The problem instead was blamed on a possible brain lesion.
Two long days later, Caroline underwent her first MRI at Children's Hospital's satellite center in Waltham. Immediately after the exam, Rick and Sarah were led to a conference room and handed a cell phone. A pediatrician told them Caroline, a feisty brunette who hates Band-Aids and thermometers, had a pediatric brain tumor.
Those words, at that very moment, changed their lives forever, Sarah said.
Rick, a National Guard major, who just days before the diagnosis returned from Iraq, fought back tears as he recalled learning of the tumor. A Lawrence native, Hamilton has worked as both a probation officer and county jail security director and overcome a variety of obstacles and enemies. But he admitted, nothing prepares you for a fight with a brain tumor.
"This has been the worst, the absolute worst," he said.
His wife, a criminal defense attorney now home raising William, 9, Caroline, and Aidan, 4, also was floored.
"I slept better with my husband in Iraq ... I knew he was a capable, competent soldier and that he'd be fine," said Sarah, who also grew up in Lawrence.
She also was fraught with worry, wondering if something she'd done or ate while pregnant or as a mother, affected Caroline's health.
"I was so careful not to even take an aspirin," she said. "Now, I'm putting stranger's blood into her."
Still happy-go-lucky
Sarah had an uncle who, years ago, died from a brain tumor, an adult tumor that was very different from Caroline's. Specialists now treating Caroline said there's no way to pinpoint what caused the tumor, however.
Over the past year, the couple have found themselves immersed in a new world, complete with neurologists and oncologists. All the while, Caroline has been a great sport, submitting to MRI and CT scans without complaint or sedation, her parents said.
On June 6, 2007, Caroline started her first round of chemotherapy, despite the treatment being "outdated and antiquated," Sarah said.
She continues those treatments today, supplemented by both blood and platelet transfusions to keep her body strong. She worries that she's literally poisoning her daughter to help her get better. And there's also the long-term effect the treatments may have on her bone marrow. There's also day-to-day hurdles, such as the loss of appetite and high risk of infection.
"If she ends up getting a fever, it's an automatic trip to the hospital," Sarah said. Sometimes, it even means Caroline has to be admitted overnight.
The Hamiltons also subscribe to alternative treatments, taking Caroline to acupuncture sessions and Reiki massage. She's also working closely with a Utah-based nutritionist who developed a diet just for the girl.
"Anything we can do, we do," Sarah said.
Since Caroline was diagnosed, Sarah said she's met many people whose lives have been touched by tumors. "Everyone has a brain tumor story," she said.
Massachusetts Sen. Edward Kennedy's recent glioma diagnosis and surgery further shined the spotlight on brain tumors. Sarah noted the senior senator has a very different tumor than her daughter. She easily explains the difference between the tumors and, with a smile, explained she'd be happy to do this on television.
"I'll go on "Oprah" and talk about this," she said.
Despite what she's endured already, Caroline remains a bubbly, happy-go-lucky child who enjoys playing in the garden and writing her name in colored chalk in the driveway.
She likes art and computer class, but admits she's psyched school's about to end. She is learning to play violin and will soon be featured in a fundraising concert.
She refers to the tumor as "that thing in my head."
The Hamiltons this summer will visit Camp Sunshine, a Casco, Maine, retreat for children with life-threatening illnesses and their families. The family is going during a week set aside for children with brain tumors.
When Caroline was first diagnosed, Sarah said the family tried to handle the matter privately. But slowly as the word got out, they found support in all kinds of places. They both can't say enough about their extended family at St. Michael Church. The parishioners have done everything from cook the Hamiltons fabulous meals to including them in their daily prayers.
"It's incredible," Sarah said. "Because you really do feel the power of those prayers."
Married for 10 years now, the Hamiltons admit having a child with an illness is very stressful.
"But our drive, obviously as parents, is to do the best for our children. I want to see Caroline grow up. I want to see her go to high school and college and have her own children," Rick said.
Sarah couldn't agree more.
"We are in this together," she said. "I wouldn't want to go through this with anyone else."
Staff reporter Jill Harmacinski can be reached at 978-946-2209 or by e-mail at JHarmacinski@eagletribune.com.
Join Team Chickaroo
Team Chickaroo is always looking for new members to help them in the battle for better research and treatment for pediatric brain tumors. For more information on Caroline, her family and fundraising efforts, check out www.chickaroo.org.
"Chickaroos are brave and strong. Chickaroos are tough. Chickaroos are winners," reads the site.
The first Chickaroo Classic golf tournament is set for July 14 at Hickory Hill in Methuen. Sponsors are still needed.
About PLGAs
- Pediatric low-grade astrocytomas are the most common form of childhood brain tumors. They also are the least researched.
- More than 20,000 children in the United States have pediatric low-grade astrocytomas today. More than 1,000 new pediatric cases are diagnosed each year.
- The tumors are called low grade because they are slow growing. But the tumor can be life-threatening if the growth is not stopped.
- If surgery is not an option, chemotherapy and radiation are used to slow the tumor's growth.
- By accelerating research and combining scientific advances, scientists and doctors believe more effective therapies can be found.
- The biggest obstacle to research is lack of funding.
Source: PLGA Foundation, www.fightplga.org
http://www.eagletribune.com/punews/local_story_168212859.html
posted 06/19/2008
Cancer Scientists Lament Funding
According to the recent Wall Street Journal article below, our children's futures are in OUR hands. With overall cancer research dollars flat over the last few years, there is no indication that this will change going forward. If we want to find new, less invasive, less toxic treatments and a cure for our children....we will have to raise the money ourselves. We can do it...if we UNITE to fight these low grade brain tumors.
By MARILYN CHASE
May 31, 2008; Page A3
CHICAGO -- Leading U.S. cancer scientists say that five years of flat federal funding of cancer research is threatening to undo major strides made against the disease.
Nancy Davidson, president of the American Society of Clinical Oncology, said researchers had experienced a $500 million decline in real spending during "the longest sustained period of flat funding" in memory. She spoke during a news conference Friday opening ASCO's annual meeting. Billed as the world's largest forum on cancer research, this year's event is expected to draw 30,000 people to hear reports on 4,200 studies.
John Niederhuber, director of the National Cancer Institute, a unit of the National Institutes of Health in Bethesda, Md., said his organization's $4.8 billion fiscal-2008 budget -- the main engine of federal funding for cancer research -- has remained in an "unbelievably flat trough since 2004."
Dr. Davidson, a professor of oncology at Johns Hopkins University in Baltimore, said the situation has led to a curtailment of research into breast cancer, melanoma, sarcoma and pediatric cancer.
"A hundred Phase I and Phase II clinical trials have been postponed, and the number of people able to participate in clinical trials has been reduced by 3,000," she said.
More than 1.4 million Americans will develop cancer this year, and about 560,000 are expected to die from the disease. There now are between 10 million and 11 million U.S. cancer survivors, up from about 3 million in the 1970s -- a measure of the gains that could be threatened.
"I'd like to say I'm an optimist," said Dr. Niederhuber, "but we're not the only pothole that is desperately in need of resources." Potential threats posed by bioterrorism and national disasters have competed for discretionary funds that might have been used for disease-fighting pursuits.
Write to Marilyn Chase at marilyn.chase@wsj.com1
http://online.wsj.com/article/SB121218082570033697.html?mod=hpp_us_whats_news
posted 06/04/2008
House Establishes May as Brain Tumor Awareness Month
For Immediate Release...
Contact: Peter Karafotas
May 22, 2008
(202) 226-6898
HOUSE PASSES SCHAKOWSKY/ROSKAM RESOLUTION ESTABLISHING BRAIN TUMOR AWARENESS MONTH
Washington, D.C.—The U.S. House of Representatives unanimously approved H. Res. 1124, a resolution introduced by U.S. Representatives Jan Schakowsky (D-IL) and Peter Roskam (R-IL) to establish National Brain Tumor Awareness Month in May. The resolution was inspired by Linda Magiera, the mother of the late Lori Arquilla Andersen, who died of brain cancer at the young age of 35 years. Shortly before the House voted on the resolution, Senator Edward Kennedy was diagnosed with a brain tumor.
“The need for this resolution could not be clearer. Senator Kennedy is one of the more than 190,000 Americans who are diagnosed each year with a brain tumor,” said U.S. Representative Jan Schakowsky (D-IL). “Our resolution, by helping to increase awareness, will improve early detection and support for additional research into brain tumors.”
“I was pleased to join my Illinois Colleague Congresswoman Schakowsky in this important effort to bring attention and renewed commitment to the fight against brain tumors,” said U.S. Representative Peter Roskam (R-IL). “The work Linda Magiera and others are doing to turn tragedy into a blessing for others facing this difficult disease is an inspiration to us all.”
Representatives Schakowsky and Roskam introduced the resolution after Des Plaines native Linda Magiera contacted them to share her daughter’s struggle with brain cancer. After her daughter’s passing, Linda Magiera founded the Lori Arquilla Andersen Foundation (LAAF) in her honor to raise awareness about brain cancer. Lori was diagnosed with stage 4 brain cancer just three months after her wedding and passed away from the disease 22 months later. Lori’s mother and sister came to Capitol Hill in April to participate in a Congressional briefing about brain tumors hosted by Representatives Schakowsky and Roskam.
Each year, more than 190,000 people in the United States are diagnosed with brain tumors, representing the third leading cause of cancer-related death among those aged 20-39. However, because brain tumors are less prevalent than lung, breast or prostate cancer, this horrible disease often does not get the attention and research funding it deserves. Brain tumors can have a devastating impact on the lives of patients and their families because it can change an individual’s personality, their ability to communicate, and their ability to walk or see. Unfortunately, with over 126 different kinds of primary brain tumors, the development of effective treatments is uncommonly complicated. The five-year relative survival rate following diagnosis of a primary malignant brain tumor is about 30 percent. However, the average survival rate for patients diagnosed with aggressive brain tumors is less than 5 percent and most survive for only 6-12 months.
####
Peter Karafotas
Deputy Chief of Staff/Communications Director
Congresswoman Jan Schakowsky (IL-09)
1027 Longworth House Office Bldg.
posted 06/04/2008
CNN wants YOUR story
CNN wants YOUR story...Help us RAISE awareness about PLGA and the children it effects! Please consider sharing your child's story about pediatric low grade astrocytoma. Go to http://www.ireport.com/ir-topic-stories.jspa?sortBy=viewed&sortOrder=2&topicId=24312&numResults=12
You will need to create an account on cnn. Make sure that your passwords match, that you give your name/phone number so they can confirm the story. You will receive a confirmation email. You'll need to complete this before you are allowed to upload your story. Now, upload your story, pictures, etc. The whole thing takes about 15-20 min.
Thanks for helping us remind the public that brain tumors effect CHILDREN too!
posted 05/27/2008
Color For A Cure Website Fights PLGA
Software engineer for the US Military, Kevin Berry was devestated when his 10 year old daughter, Emily, was recently diagnosed with PLGA. Determined to do something about the lack of treatments and a cure, Kevin and his family launched www.colorforacure.org website.
The website inspires viewers to help solve the PLGA lack of funding problem by donating as little as $1. Kevin believes that "no one person should have to endure the funding burden. We can all share in this together by donating JUST a dollar (or of course more). Every dollar counts. If we can get 1 million people to donate $1 each, we can really help move the needle on critical PLGA research that could save my daughter's life."
www.colorforacure.org promises to allow the donor to light one 'pixel' in the 1 Million Pixel PLGA Picture for every dollar they donate. The donor can even pick the color of the pixel!
Kevin says the success of this site rests not just on people making a small donation, BUT on people sending the web address to their friends, family, colleagues, etc. "This is going to be a viral marketing campaign. Imagine if we can build awareness of PLGA with 1 million people!"
$1, 1 person BIG difference!
posted 05/15/2008
Pitt Gets Money to Fight Brain Tumors
By The Tribune-Review
Thursday, April 24, 2008
Pittsburgh cancer researchers have received a $6.24 million grant for three projects to take brain cancer treatments from the lab to clinical trials, the University of Pittsburgh School of Medicine said today.
The grant from the National Institute of Neurological Disorders and Stroke will pay for five years of research testing therapies for a type of brain tumor called gliomas. The projects are led by Dr. Ian Pollack, chief of the Division of Pediatric Neurosurgery at Children's Hospital.
"Our researchers have developed three unique and promising approaches to treating gliomas, which are the most common form of brain tumors," Pollack, also director of the University of Pittsburgh Cancer Institute's Brain Tumor Program, said in a news release.
"Over the next five years, our goal is to take these approaches from the laboratory to clinical trial and begin to have a direct impact on patients diagnosed with brain tumors."
The three projects involve molecularly targeted therapies to interrupt tumor growth, vaccinations against tumor growth and using viruses to kill tumor cells.
About 19,000 people are diagnosed with primary brain tumors annually and malignant gliomas are the most common, according to the National Cancer Institute.
For more information about Pitt's Cancer Institute, visit online. For more information about Pollack's research, visit online.
http://www.pittsburghlive.com/x/pittsburghtrib/search/s_564090.html
posted 04/28/2008
Hoping for Oprah
On January 24th, 2008, Shannon Meltz, mother of 2 year old Hailey (JPA), was interviewed by Oprah Winfrey as she sat in the audience to watch a taping of the Oprah Winfrey show. Shannen explained to Oprah, and her entire audience, about PLGA and the need for new research and funding. Oprah asked how she could help, and Shannon answered, 'Please do a story on the PLGA kids and the fight that the PLGA families have to under take in order to get new research, treatments and a cure." Oprah said she would consider a story of this nature.
Please help us encourage Oprah to make this a reality. Go to the Oprah site and request that they do a show on the PLGA Foundation, Hailey Meltz and the other families fighting this same battle.
Obviously you can and should craft your own message, but a few suggestions or important points to consider:
- It would be good to have the same title for all messages. Something like “Hailey Meltz and the PLGA Foundation (www.fightplga.org)”
- You may want to say that Hailey’s mom, Shannon, was at the show Thursday January 24th and stood up after the show to tell Oprah and the audience about our cause, and that the stage manager took our business card and a copy of the newspaper article from Shannon.
- PLGA is the most common form of childhood brain tumor. Brain tumors are the #1 cause of solid tumor deaths in children.
- There are no known cures and current treatments often leave children with permanent neurological and gross motor defecits, if they survive.
- There has been little research on PLGA in the past 20 years because there is little funding.
- The PLGA Foundation, recently launched (2007) was created by families with PLGA kids in order to raise significant funds and jump start promising research. These families have already raised over $6 million and has allocated over $3.8 million for 7 new research projects and the launch of the first ever dedicated PLGA Researh Program at the Dana Farber Cancer Institute.
- But there is still so much more that needs to be done. The PLGA Foundation is trying to unite families from across the world to leverage knowledge, resources and support for all families afflicted with this type of tumor.
- This is a grassroots effort. A story about families and communities taking matters into their own hands, trying to move heaven and earth to save their children. And the children themselves, suffering, battling the unthinkable, desperately needing a cure so that they get the chance to fight for their dreams, NOT for their lives.
posted 04/19/2008
CNN's Coverage of the PLGA Foundation
An article in CNN.com's Health Section (12/27/07) featured the PLGA Foundation: http://www.cnn.com/2007/HEALTH/12/27/ep.cure.child/index.htmlposted 01/03/2008
| Title | Author(s) | Publication | Date |
|---|---|---|---|
| PLGA Press | |||
| Appleton parents share daughter's battle with brain cancer |
M.P. King |
Appleton Post Cresent |
1/11/08 |
| Special Gift for Girl Comes From Unlikely Place | Cheryl Sherry |
Appleton Post Cresent |
11/25/07 |
| Shopping to Fight Childhood Cancer |
|
WFRV TV |
10/24/07 |
| Two Year Old Appleton, WI girl wages battle for her life |
Cheryl Sherry |
Appleton Post Cresent |
10/ 21/07 |
| Funding for sick kids Elizabeth Cohen finds some parents who turn to do-it-yourself funding to treat their children's rare disease. |
Elizabeth Cohen |
CNN |
9/4/07 |
Ensuring Money You've Raised Goes to Help Your Sick Child |
Amy Dockser Marcus |
Wall Street Journal |
1/30/07 |
Boston University students establish the first chapter of FightJPA, a nationwide group that raises money for research on juvenile pilocytic astrocytoma (JPA), a type of brain tumor in children. |
Jenna Nierstedt |
Daily Free Press |
10/2/06 |
Riding To Fight Brain Tumors |
Richard C. Lewis |
Boston Globe |
5/18/06 |
Putting Mettle to Pedals to Save a Boy's Life |
Carolyn Thorton |
Providence Journal |
05/11/06 |
| Children's Brain Tumor Press | |||
Children with Brain Tumors Don't March |
Michael Arnold Glueck & Robert J. Cihak |
Newsmax.com |
05/02/05 |
A Cry in the Dark |
Amy Dockser Marcus |
Wall Street Journal |
03/20/06 |
Pediatric Brain Tumor Survivors and Late Effects |
Maggie Fox |
Reuters |
08/22/05 |
Emily's Story |
Thomas Farragher |
Boston Globe |
06/19/05 |
Parents Face Painful Choice In Treating Childhood Cancer |
Amy Dockser Marcus |
Wall Street Journal |
03/01/05 |
They're Making the Best of It |
M. English |
The Colonial News |
10/13/06 |
| Other Press | |||
National Institutes of Health, Office of Rare Diseases, How to handle Orphan Diseases |
Amy Dockser Marcus |
Wall Street Journal |
1/29/07 |
Expansive Effort Is Begun to Study Rare Diseases |
Jennifer Corbett Dooren |
Wall Street Journal |
5/16/06 |
Next Chapter: After Leukemia, Family Struggles To Define 'Normal' |
Amy Dockser Marcus |
Wall Street Journal |
06/09/04 |
Bloodless Revolution |
Harbour Fraser Hodder |
Harvard Magazine |
11/00 |