Neuroblastoma Parents Network

Vaccine hope as brave Grace enjoys remission

2009-04-01T09:57:00.001-07:00

April 1, 2009 There is new hope for children such as courageous Grace O'Gorman who have to battle cancer at a very young age.

A just developed vaccine that could prevent relapses promises far greater potential relief from the devastating effects of the cancer that Grace has been battling, Stage Four Neuroblastoma.

And Grace's parents have set up a new charity that will be working to aid other children facing the same challenges as the young County Cork girl, who has been in treatment since last year at Memorial Sloan Kettering Cancer Center in Manhattan.

"Grace is in remission again," her mother, Millicent Stone, who is a doctor, told the Echo.

"We are trying to ensure the vaccine is available for her and all the other kids so they survive. The whole point of our new charity to make those stories a thing of the past," she said.

The new charity is called Angels for Hope Neuroblastoma Research Foundation Inc. and to kick start its effort the group is hosting a benefit at The Carlyle Hotel this Thursday, April 2, to begin the process of raising funds for a vaccine against relapses of the cancer that has made two-year-old Grace's life so difficult.

Grace's medical problems first became evident last year when her parents, who are from Passage West in County Cork, were traveling to Toronto where her mom had secured a hospital post.

When they stopped in Rochester, NY, Millicent and Grace's father, Kevin, noticed that Grace was limping. Not wanting to take any chances Millicent flew back to New York with Grace while Kevin continued to Toronto as their other daughter, Alice, was starting school. It was at that point that the diagnosis of cancer changed the O'Gorman family's life.

Grace's subsequent battle against cancer was given a big boost when a fundraiser organized by the County Cork Association in New York raised $45,000 to help meet her enormous medical costs.

This and other fundraising efforts have raised over $80,000 to date. But the total cost of Grace's treatment could end up coming with an extra zero: $800,000.

All of the family's savings, plus money borrowed, has gone to Grace's treatment to date. Meanwhile, details on the Carlyle event are available at www.projectuploaded.com/Angels/html/.

The battle against childhood cancer has been stepped in recent years as new treatments come on stream but fundraising is a constant necessity. And it was with this in mind that Tim Kenny and others decided to create St. Baldrick's Day nine years ago in New York and attach it to a most familiar calendar date, March 17th, St. Patrick's Day.

This year, Kenny, who is chairman of the group's board, initiated the first St. Baldrick's head-shaving event in Jim Brady's Irish Pub in Manhattan's financial district.

"St. Baldrick's raises funds for childhood cancer research by hosting worldwide head-shaving events where volunteers shave their heads to stand in solidarity with the kids who typically lose their hair during cancer treatment," said a statement from the organization.

On the first St. Baldrick's Day, the goal was to raise $17,000 by shaving 17 heads on March 17th. Since then, St. Baldrick's has raised over $57 million, has shaved over 94,000 heads at over 2,200 events held in 48 states and 18 countries.

This year, Kenny was joined by volunteers and supporters when he rang the closing bell of the NASDAQ stock market.

This story appeared in the issue of April 1-7, 2009

Ch14.18 after transplant increases survival

2009-03-20T14:58:00.000-07:00

COG announced the early study results of ANBL0032. They have determined that the immunotherapy (experimental) arm of the study – a combination of ch14.18 antibody, cytokines (IL2 and GMCSF) and Accutane more effectively reduces the risk that neuroblastoma will grow back than treatment with Accutane alone. Furthermore they have determined that the immunotherapy, as specifically delivered on COG ANBL0032, increases the chance of survival after completion of therapy including stem cell transplantation when compared to treatment with cisRA alone. According to the statement they now expect that this immunotherapy may eventually become a standard part of high-risk neuroblastoma treatment after stem cell transplant. More info at:
http://www.curesearch.org/uploadedFiles/Statement%20from%20COG%20regarding%20ANBL0032%20results%2003%2019%2009.pdf

Posted on 03-19-2009

Family Says Alternate Therapy Saving Boy With 11 Tumors

2009-02-09T12:07:00.000-08:00

Fox News, Friday, February 06, 2009
http://www.foxnews.com/story/0,2933,489085,00.html

In 2006, 5-year-old Connah Broom developed an aggressive form of neuroblastoma. His body contained 11 tumors and, in 2007, doctors told his parents there was nothing more they could do.
But Connah’s family refused to give up hope, so they began giving him alternative treatments, consisting of an organic diet and a daily sauna, electromagnetic energy therapy and laser therapy.
Now 7-years-old, Connah’s family says 10 of the 11 tumors are shrinking according to the latest scans.
Neuroblastoma is cancer of the nervous system. When diagnosed, Connah had stage 4 cancer – the deadliest form. The tumors started in his neck and traveled throughout his body all the way down to his left leg.
Connah’s family, who lives in Gronant in North Wales, decided against using experimental drugs because they could damage his organs.
Although doctors are skeptical about the alternative therapies, Connah’s family said they will keep doing it until it stops working.
“If what we’re doing stops working, then we’ll look for another treatment,” said Debbie Groom, Connah’s grandmother. “We’ll never give up doing everything in the world to help our little boy.”

More on this from The Sun:
http://www.thesun.co.uk/sol/homepage/news/article2211094.ece

Comics For A Cure (Boston, MA)

2009-01-08T08:30:00.000-08:00

To benefit the Children’s Neuroblastoma Cancer Foundation:

Comics For a Cure features Nick DiPaolo, Joe List, Gary Gulman, Kelly MacFarland, and Kevin Knox. Join us at the beautiful Cutler Majestic Theatre in Boston at 8pm on Friday, January 9th. Also featuring music spun by DJ Mario- Boston's best DJ! Go to www.ComicsForACure.org for more info and to purchase tickets. All proceeds benefit the Childrens Neuroblastoma Cancer Foundation.

If you can't make the show- you can donate or sponsor tickets for families and medical staff affected by pediatric cancer in this area- every dollar counts!

Thank you!

Tracy Harding

Founder, "Comics For A Cure"
www.ComicsForACure.org

Read more about Comics for a Cure on the Quincy, MA based periodic Patriot Ledger web site.

New Insight Into Aggressive Childhood Cancer

2009-01-07T16:21:00.000-08:00

ScienceDaily (Jan. 7, 2009) — A new study reveals critical molecular mechanisms associated with the development and progression of human neuroblastoma, the most common cancer in young children. The research, published by Cell Press in the January 6th issue of the journal Cancer Cell, may lead to development of future strategies for treatment of this aggressive and unpredictable cancer.

Dr. Rudoph Roskos, South Florida, a Gift for Healing Children

2009-01-07T15:53:00.000-08:00

Dr. Rudolph Roskos and Dr. Hector Rodriguez are the heads of the Broward General Medical Center Pediatrics Hematology and Oncology in Ft. Lauderdale, FL.
Their team develops outstanding job on Pediatric Oncology and I consider world class reference.

Don't hesitate to call their office if you are challenged with a Neuroblastoma case in your family.

1600 S. Andrews Ave #100
Fort Lauderdale, FL 33316
Phone: 954-355-4527

Please read his profile on the Borward Health website.

Neuroblastoma

2009-01-07T15:43:00.000-08:00

Durante o desenvolvimento embrionário dos seres humanos existe uma estrutura que se chama crista neural, que vai originar muitas partes do sistema nervoso, tanto central quanto dos nervos que vão a diversos órgãos. Os neuroblastomas se originam das células desta crista, podendo aparecer em diversos locais do organismo, desde a região do cérebro até a área mais inferior da coluna, incluindo todo abdome.Não há estatísticas brasileiras sobre este tipo de tumor. Mas sabemos que dos tumores não cerebrais, o neuroblastoma é o mais freqüente, e corresponde de 8 a 10% do total de casos de câncer infantil.
A idade média de diagnóstico é de 2 anos e 90% são diagnosticados com idade menor de 5 anos. Costuma atingir mais meninos e raça branca. Algumas doenças genéticas favorecem seu aparecimento (neurofibromatose, doença de Hirschprung,etc). Cerca de 70% dos neuroblastomas aparecem no abdome, 50% dos quais na glândula adrenal. Outros 20% aparecem no tórax.
O tumor costuma se espalhar inicialmente nas áreas ao redor dele por invasão e para linfonodos da região, através dos vasos linfáticos. É freqüênte ainda, pelo sangue, atingir a medula óssea, ossos e fígado. Mais raramente atinge cérebro e pulmões. Estes tumores podem secretar uma variedade de substâncias neurologicamente derivadas, incluindo as catecolaminas (adrenalina, noradrenalina), ferritina e enolase neurônio específica (NSE). Quando as catecolaminas são metabolizadas em nosso organismo, formam o ácido vanilmandélico que pode ser dosado na urina e ser então um indicativo da doença. Em 80 % dos casos se detecta anormalidades citogenéticas.
O neuroblastoma leva aos mais variados sintomas. Apresentações comuns incluem massa dura e indolor no pescoço, massa no tórax achado em raio X, massa palpável no abdome. A criança aparente estar doente cronicamente, com dores ósseas pelas metástases para osso e medula óssea. Em 60-75% dos pacientes tem doença avançada ao diagnóstico. Se o tumor se origina na coluna, pode haver paralisia. Os sintomas também incluem distúrbios metabólicos que o tumor provoca. Desequilíbrio, movimentação rápida e descontrolada dos olhos (opsoclonus) e contraturas musculares tipo espasmos ocorrem em 4% dos doentes. Diarréia severa levando a um déficit de potássio e cloreto corporal e pressão alta podem estar presentes pelas substâncias produzidas pelo tumor.Estudos radiológicos são realizados para se determinar o local de origem do neuroblastoma, incluindo raio x de tórax, tomografias de tórax, abdome e pelve e cintilografia óssea. Isto é necessário para ver o tamanho da massa e verificar a possibilidade de retirada cirúrgica. O diagnóstico deve ser confirmado por biópsia. Exames da medula óssea devem ser realizados antes de qualquer procedimento cirúrgico para ver se há invasão.
Para tumores localizados, a cirurgia é geralmente curativa. Mas a maioria dos casos já se apresenta mais avançada, aumentando os papéis da quimioterapia e radioterapia, com chance de tornar o tumor ressecável cirurgicamente. A radioterapia pode ser usada para controle do local primário associado à quimioterapia ou como tratamento paliativo na doença metastática. Os fatores que mais influenciam o prognóstico são a idade e o estadiamento.
Crianças menores de 1 ano têm melhor resposta que qualquer outra crianças mais velha, mesmo apresentando estadiamento semelhante. Com doença menos avançada, a sobrevida chega a 90% mas com doença metastática, a sobrevida chega ao redor de 50%.
Quanto mais velho o paciente e mais avançada a doença, pior o prognóstico. Mesmo com terapia agressiva ou transplante de medula óssea para as crianças mais velhas, a sobrevida raramente ultrapassa 20%.

DISCLAIMER

2008-08-04T13:19:00.000-07:00

This blog is being written and composed for educational purposes and for connecting people with similar needs only, it can not be used for diagnosing or treating a health problem or a disease. If you have or suspect that you or your child may have a health problem, you should immediately consult a doctor. No responsibility can be accepted for information on any linked page, please read the provider's own disclaimer where appropriate.

About Neuroblastoma and the Mission of this Site

2008-08-04T09:19:00.000-07:00

Neuroblastoma is one of the most common solid tumours of early childhood usually found in babies or young children. The disease originates in the adrenal medulla or other sites of sympathetic nervous tissue. The most common site is the abdomen (near the adrenal gland) but can also be found in the chest, neck, pelvis, or other sites. Most patients have widespread disease at diagnosis.
The ultimate objective of this page is to bring parents, families, and phisicians together so that the hope for cure can be always closer. Also, this page contains links to information specifically related to Neuroblastoma and other relevant resources from institutes and societies that are among the many important Neuroblastoma centers out there.

If you need to contact us, your welcome and/or comment is welcome in English, Portuguese, Spanish, Italian and French. Other languages will also be answered with a little delay.