What is Neuroblastoma?: Neuroblastoma is a disease in which malignant cancer cells form in the nerve tissue of the adrenal gland, neck, chest or spinal cord mainly in children age five years or younger. Survival is dependent on age and stage of disease. Neuroblastoma is one of the most deadly childhood cancers over the age of one and the second most common solid mass tumor in infants.. Usually, by the time symptoms appear, the disease has progressed to Stage 4 (metastasized and spread to other areas of the body). Approximately 650 children are newly diagnosed each year in the US with Neuroblastoma and about 60% of them are “high-risk”. These “high-risk” children have a 30% chance of growing up. It is a very difficult cancer to beat once it has reached Stage 4. Years ago, this disease was consider lethal and in the 1980’s, fewer than 5% of children diagnosed with high-risk Neuroblastoma survived. Most children who survived suffered severe side effects. These less than favorable odds do not deter doctors, researchers, parents and supporters from doing everything humanly and spiritually possible to try and prolong the child's life with various treatment options as a search for a cure continues. Most children with NB IV undergo surgery to remove the primary mass, at least 6 rounds of high-dose chemo, stem cell rescues and/or transplant, radiation and immunotherapy treatment.

Every NB IV child is different and not two respond the same to treatment which makes determining which therapy will bring about the most response very difficult; therefore, most NB IV children are treated for years...and these are the lucky ones whose lives were prolonged with some quality of life. If a child becomes disease-free, treatment becomes less aggressive; however, maintenance and tests are frequent throughout the child’s life and the doctors must stay one step ahead of the disease for a single cell left behind...undetected by any test/scan will rear its ugly head in a matter of time and cause the child to relapse. Most children relapse and it is more difficult to get the child into a second remission.

Jessica’s Diagnosis & Prognosis: On December 16, 2006, two weeks before her 4th birthday, Jessica Rose was diagnosed with Neuroblastoma. She is "high-risk" because of her age, the stage of the disease (IV) and it’s lack of responsiveness to standard NB protocols. Jessica's cancer formed in the adrenal gland. The primary tumor was on her left kidney. After three rounds of high-dose chemotherapy taking place in December, January and February, 2007, at All Children's Hospital in St. Petersburg, FL, world-renowned surgeon, Dr. LaQuaglia, at Memorial Sloan Kettering in NYC operated for over 11 hours to remove the mass on February 28, 2007. The mass was wrapped completely around the length of the aorta and both renal arteries. The cancer dramatically decreased between December, 2006 and May, 2007, as a result of the surgery and 5 rounds of chemo. Today there are long-term survivors due to research by doctors who have dedicated their lives to finding a cure for Neuroblastoma. These are the same doctors that are treating Jessica today at Memorial Sloan Kettering Cancer Center in NYC.

The Neuroblastoma Team at Memorial Sloan Kettering Cancer Center in NYC: This team of approximately seven specialists is dedicated solely to the treatment and cure of Neuroblastoma; whereas, most hospitals do not have specialists dedicated to Neuroblastoma. MSKCC sees more Neuroblastoma patients than any other hospital in the world. Almost 50% of the pediatric cancer patients seen daily at MSKCC have Neuroblastoma. Dr. Cheung, chief research scientist, has been studying Neuroblastoma for over 20 years and about 20 years ago he identified the gene in a mouse that enabled the mouse to fight the Neuroblastoma it was injected with. Through the years, Dr. Cheung has been successful with modifying this monoclonal antibody derived from a mouse and using it to treat children diagnosed with Neuroblastoma. This immunotherapy treatment is known as 3F8. The 3F8 can attach itself to the Neuroblastoma cells and kill them. 3F8 can also train the child’s immune system to recognize NB cells and attack them. Today, 80% of children treated at MSKCC from diagnosis reach remission. This treatment is not without its issues because using animal proteins in humans causes certain problems. However, through chemical and genetic engineering techniques researchers can further modify the mouse antibodies to be more like human antibodies. Developing these monoclonal human-like antibodies is a critical step in continuing to move forward with battling cancer, especially childhood cancers like Neuroblastoma. A possible reaction to the 3F8 immunotherapy is known as HAMA (Human Anti-Mouse Antibodies). HAMA occurs when patients develop their own antibodies against the mouse antibodies neutralizing them and preventing them from attaching to the cancer cells. When a patient experiences HAMA, the 3F8 treatment must stop regardless of how effective it may have been for the patient in the past at killing the cancer. Because of this immune reaction to 3F8 for many of the high-risk NB children, the priority of the team is to further humanize the 3F8 monoclonal mouse antibodies so the child’s body does not reject it by developing their own antibodies against it. Humanized monoclonal antibodies are more effective at fighting cancer than antibodies that are 100% human and this is explained in detail at http://bandofparents.org/3f8antibody.html. The project to develop the HU3F8 is finally beginning to move forward. It has been delayed due to lack of funding. The severe shortage of funds to develop new drugs for clinical trials is because of government cuts for pediatric cancer research and because pharmaceutical companies invest in drugs for cancers that are not "rare" like Neuroblastoma and therefore, are not viewed as a profitable investment for them. The harsh reality is “business is business” for pharmaceutical giants and unless the drugs are widely used for more common cancers such as prostate, lung or breast cancer, the lack of funding will continue and there is little hope with beating this cancer without your help. Most drugs used on children today to fight cancer were developed for adults 20 to 30 years ago. Fortunately, pediatric cancer is considered rare but unfortunately, about 13,000 children are diagnosed with it each year in the US. A direct result of the fundraising and awareness efforts put forth by the parent group Band Of Parents has recently enabled MSKCC to obtain a commitment from a biotechnology company to move forward with the HU3F8 project. The team believes it is the best chance of long-term survival for NB children with refractory (stubborn) disease or relapsed disease or those patients who built up an immunity too soon to the 3F8 therapy (HAMA). MSKCC is also about to release a vaccine intended to strengthen the child’s immune system against NB. Studies have shown that over the past 20 years 3F8 immunotherapy has notably improved survival of high-risk patients. So, in the first half of 2007, parents of NB children being treated at MSKCC posed the question to Dr. Cheung: “What can we do to help save our children?” after learning that the lack of money was the reason why desperately-needed new treatments were not available today. Approximately $2-3 million dollars is needed to begin the development of the HU3F8 drug which could move along rapidly since the research was already complete. The parents in the room new immediately what they had to do—raise the money needed for the HU3F8 project on their own. The parent group, Band Of Parents: Bound By Hope was formed. Extraordinary efforts immediately began to create awareness for our children and to hold fundraisers to begin raising $2-3m for MSKCC to secure a pharmaceutical company/lab and staff needed to begin the development of the drug. So successful were all our efforts that Dr. Cheung received a commitment from a biotechnology company to move forward with the development of HU3F8 already although we have not raised the amount we were initially told. Dr. Cheung recently wrote the following to the Band: "This development is a direct result of the inspiration provided by all of the families and children across the nation in our care. We thank you for your passion, determination, and energizing efforts that uniquely helped to accelerate this initiative and make this possible. You have collectively and literally moved "mountains" and have given many something to be thankful for over the holidays. As we bring in the year 2008, your "magic" has only just begun. Please share this note with all who have helped bring us to this step." The fundraising efforts must continue beyond the initial development investment to ensure clinical trials are available for all the children who need HU3F8. We have only just begun and have a LONG way to go. You can play a part in this very important mission that will no doubt, help save the lives of thousands of children over the years to come.

The Band Of Parents (BOP) www.bandofparents.org: As a result of no funds being available in order to give our children as well as many other children a better chance of surviving Neuroblastoma, in 2007 the parents of these children formed a non-profit group dedicated to furthering the research and treatment options so desperately needed. Our motto is: “BOUND BY HOPE”. What follows is an excerpt from the BOP web site: “Against this bleak scenario, a group of ordinary parents bound by extraordinary circumstances founded the Band of Parents. Our mission is to raise money to further support and accelerate the research of the talented and dedicated team of doctors and scientists at Memorial Sloan-Kettering Cancer Center (MSKCC), the institution that treats more cases of Neuroblastoma than any other hospital in the world. Our kids' doctors are investigating exciting treatment options that they believe could help save more children with Neuroblastoma." …each of us has a child diagnosed with Neuroblastoma. Although some are in remission, many of our children are fighting for their lives right now. Because Neuroblastoma can recur years after treatment, the fear of losing our children is always present. We wish to save these children and spare other families this suffering. We passionately believe that we can save lives by raising funds to support the new treatments being developed at MSKCC.”

Band Of Parents: “How Much Is A Child’s Life Worth?”: “Most children will undergo numerous rounds of high dose chemotherapy, complicated surgeries, intense radiation therapy, endless x-rays, and scans that expose them to levels known to be dangerous. Children will also be subjected to numerous drugs and medicines often not developed or even proven safe for children. The treatments are torture for children to undergo and emotionally devastating for parents to watch. Kids lose their hair and pink cheeks and become vulnerable to serious infections and viruses when chemotherapy destroys their immunity, and cry in pain during countless invasive procedures. And it is unbearable to know that 70% of these children will still die in their anguished parents' arms, their bodies overcome by a ruthless killer and their eyes full of fear and confusion, not understanding why their loving parents and committed doctors could not make them better.”

“Time is running out for many of the children diagnosed with this deadly disease. We, the Band of Parents, truly need your help. Faced with a lack of funding from the government—and a lack of interest from the pharmaceutical industry, Neuroblastoma stands to win. Without the help and support of individuals like you the Children fighting this disease today and those who will be unfairly chosen to fight tomorrow will have no better chance of winning than they do today. Please consider making a donation to help us fund a cure.” http://bandofparents.org/MakeDonation.html

Jessica Rose Gallery  - Click on Album to Play Slide Show

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A Parent’s Worst Fear: Imagine your worst nightmare coming true and being told: ”Your child has a rare form of cancer for which there is no known cure and has a 30% chance of surviving and will experience severe side effects as a result of the treatment options available today. There will be a lot of pain, suffering and tears for both you and your child. There is a 70% chance we won’t win.” Although doctors do not use these harsh words with us, it is our reality, and parents of NB children have been living with these odds for years. Now, imagine your child is one of the 30% who actually beats this horrid disease. They go on to live a long life. Every smile is precious, every laugh is treasured and every day is a gift but their life will never be normal. They will deal with many side effects from the toxic drugs used to treat them such as possible hearing loss, heart problems, learning disabilities, impaired vision, sterility, kidney damage and they are at a much greater risk of getting a secondary cancer such as Leukemia. We are committed to changing these unfavorable odds for our children and the NB children of tomorrow.

Jessica may be MY daughter but children with cancer belong to the world. If you are reading this, then you have the ability to do something--such as, educating others and spreading awareness, donating a service to help other families with pediatric cancer, making a donation to pediatric cancer research foundations or charities that help children, holding a fund raiser to raise monies and awareness and finally, compel others into action. You have the power to make a difference. If people choose to do nothing, more children will continue to suffer and die. If your children are healthy, you have NO idea how lucky your family is. Cherish these days and be thankful for what you have. Hug and kiss your children every day and tell them you love them often because your world can fall apart in the blink of an eye as it did for us. If you ever feel unsure of what to do, remember these words written by a mother on the day her daughter lost her battle with cancer: " She was in our arms and let go of this life to be in Heaven with God. We were afraid she might die while we slept, but she gave us yet another gift. She waited until the sun rose.....she took her last breath and all was peaceful."

If you find it in your heart to take action and help someone who does not have your good fortune, than you ARE making a difference. Please go to www.bandofparents.org or www.loneliestroad.org and make a donation to help us develop the most promising drug for children with “high-risk” Neuroblastoma and please help spread awareness! The children and their parents thank you!

Maureen Massari

Mom to Jessica Rose

January, 2008

Shocking Facts About Cancer Funding:

• In the U.S. almost 3,000 children do not survive cancer each year.

• Cancer is the number one disease killer of children.

• Over the past two decades, only ONE new cancer drug has been approved for pediatric use.

• Only 3% of the National Cancer Institute Budget goes toward Pediatric Cancer Research.

• September is Pediatric Cancer Awareness Month, which nationally goes unrecognized.

• The federal government recently cut the budget for Childhood Cancer Research.

• Currently there are between 30  - 40,000 children undergoing cancer treatment in the U.S.

• As a nation, we spend over $14 BILLION per year on the space program, but only $35MILLION on Childhood Cancer Research each year.