Monday, December 24, 2007

Merry Christmas Everyone!!!

I wish all of my friends and family a very merry Christmas and a safe and Happy New Year!

I can't believe that it will be 2008 next year and our little Bella will start kindergarten. It will be a very emotional moment for me with everything she went through with the Neuroblastoma. I appreciate all the little moments with her and remind myself how special she is and how close we came to loosing her. We are very lucky to have her in our lives and It is my hope is to see her share her experience with other kids who will be diagnosed with this horrible disease. Hopefully she will give them hope that they too can beat it.
Merry Christmas to all!

Wednesday, December 19, 2007

Lunch for Life Cookbook

The Lunch for Life Cookbook by The Families of Lunch for Life
Price: $19.95 + S/H (3.95)
Available: In production, due December 1st, 2007
Want it delivered by the Holidays?
Order today. Quantities are limited! Make sure you order by December 18th to ensure a Christmas Delivery.
Description: The Lunch for Life Cookbook is a collaboration of families of children with neuroblastoma. Over 100 families and celebrities contributed their absolute best recipes to the production of this cookbook. Not only will purchasing this cookbook go along way in aiding our quest for a cure but we believe you will also be receiving some of the best recipes on the planet.
Funds raised support: All proceeds will go to benefit the Children's Neuroblastoma Cancer Foundation, a 501(c) 3 public charity dedicated to finding the cure for neuroblastoma.

Wednesday, December 05, 2007

Cookies for Cancer

Cookies for Kids’ Cancer

A gift that tastes as good as it feels to give.

Give all the kids fighting neuroblastoma today, and thosewho will be so unfairly chosen to fight tomorrow, the hopeall children deserve.

The Band of Parents invites you to be a part of our holiday fundraiser and to give new hope to children fighting cancer! This holiday, give freshly-baked cookies made using recipes from the recently published cookbook, Cookies, by acclaimed cookbook author Sally Sampson.

See their web site at:

The Cookies for Cancer was put together by the Band Of Parents bound by hope foundation.

What is the Band of Parents you ask?.....

We are parents of children diagnosed with a cancer called neuroblastoma who want to help further the research and drug development desperately needed to save more children. Neuroblastoma is an “orphan” cancer; pharmaceutical companies are not developing new treatments because there is not a large enough patient base to make development profitable. Funding from the government is similarly limited. Time is running out for many of our children -- money stands between them and a cure.

Tuesday, December 04, 2007

A Good Read

This story is from the Boston Globe, I don't have the link to the story but it's definitely worth the time to read. =) Enjoy.....

Despite optimistic claims by national leaders that America is finally turning the tide against cancer, a growing number of patient advocates and researchers say they are discouraged by continuing slow progress in the nation's 36-year war against the disease.

Many of the most anticipated new drugs have extended patients' lives by only a few months at great expense, they say, and researchers still don't understand what makes the disease spread - the cause of 90 percent of cancer deaths.

Although deaths from cancer have declined slightly since 2002, cancer specialists say that reflects earlier detection of the disease as well as lifestyle changes, such as quitting smoking, more than dramatic improvements in treatments. For many types of cancer, once the disease has spread, or metastasized, the patient's chance of long-term survival is not much better than when President Nixon declared "war" on the disease in 1971, triggering what is now a $69 billion federal investment in cancer research. A patient whose lung cancer has spread to other organs, for example, has a 3 percent chance of surviving five years after the original diagnosis.

With federal funding for cancer research frozen since 2003, critics say the pace of progress could slow even more as young researchers leave the field. This year, the disease is expected to kill 560,000 people, putting cancer on a pace to become the nation's number one killer in the next few years. Heart disease, the current leading cause of death, has become almost 50 percent less lethal since the early 1970s, thanks to breakthroughs such as artery-clearing stents and cholesterol-lowering drugs.

"I would have expected us to be doing a heck of a lot better based on the investment that we've made and based on the prevalence of the disease," said Kathy Giusti, founder of the Multiple Myeloma Research Foundation, an organization based in Connecticut and one of several groups pressing researchers to develop better medications more quickly. When she was diagnosed with multiple myeloma, a rare blood cancer, in 1996, she said, "the treatments they offered me were exactly the same ones they offered my grandfather when he had the disease."
Advocates acknowledge that treatment is improving for some cancers - four new medications have been approved for multiple myeloma alone in the past five years, in part thanks to Giusti's efforts, while drugs such as Herceptin have extended the lives of women with breast cancer. But that is not enough to ease the fears of the 1.4 million people who will learn this year that they have cancer. After cancer spreads from its original location, doctors can only delay the disease, not cure it.
Moreover, studies show that many patients are not sharing in the modest progress, including those who have less common cancers as well as people with limited access to healthcare. Black women with advanced breast cancer typically live no longer now than in 1988, while white women have seen their life expectancy after diagnosis grow from 20 to 27 months, according to a recent study. The researchers said the likely factor was poor access to the latest treatments.
"I have never been as worried about our nation's commitment to the war on cancer as I am today," said Nancy G. Brinker, a breast cancer survivor and founder of an advocacy group called Susan G. Komen for the Cure, in a speech to thousands of cancer specialists in Chicago in June. She called on researchers to come up with better medicines: "There is a Great Divide between discovery and delivery . . . when we celebrate as 'breakthroughs' treatments that cost $50,000 and that extend life, at most, a few months! This is progress?"

Ironically, the pessimism comes at a time when knowledge about cancer is exploding and when leaders of the National Cancer Institute and the American Cancer Society talk hopefully about a day when doctors can stop cancer without the toxic side effects of traditional radiation and chemotherapy treatment. In 2005, the National Cancer Institute's director then, Andrew C. von Eschenbach, was so encouraged he set a goal of eliminating cancer by 2015.
Today, leaders of both institutions are careful not to declare victory, but they see clear signs of improvement, such as the slight decline in deaths from cancer that began in 2003 and continued through 2004, the latest year for which data are available. With a record number of cancer drugs now undergoing human testing, cancer leaders say the future for cancer patients looks brighter than it has in years.
"The evidence is unmistakable: We are truly turning the tide in the cancer battle," declared John R. Seffrin, chief executive officer of the Cancer Society, in an October news release celebrating the declining death rate.

Americans "have heard the same song for a generation - that we're finally making progress against the disease, that we've turned the corner. And it doesn't jibe with what they see and experience in their own lives," said Clifton Leaf, a Hodgkin's disease survivor and former Fortune Magazine editor who is writing a book on the "dysfunctional" cancer research industry. "Their loved ones are dying."
Leaf believes that researchers have created their own problems by avoiding the toughest issue in cancer. The National Cancer Institute doesn't track how much of its budget goes toward metastasis research, but Leaf found that only 0.5 percent of institute grant proposals have focused on metastasis since the war on cancer began.

Today, doctors have few medicines that can shrink large metastatic tumors, and, for most cancers, no reliable way to tell patients after cancer treatment that the disease will or won't come back as metastasis. The difference is profound: A patient who has localized colon cancer has a 90 percent chance of being alive in five years. But, if the cancer has spread to distant parts of his body, the five-year survival rate drops to 10 percent.
"People come out of cancer surgery feeling like time bombs" because they don't know whether the disease will return, said Bruce R. Zetter, chief scientific officer at Children's Hospital Boston, who specializes in the study of metastasis.

Danny Welch, a pathologist at the University of Alabama at Birmingham and president of the Metastasis Research Society, said the failure to control metastasis is a major reason that the death toll from cancer has not come down dramatically. He said metastasis researchers have struggled to get support, largely because the spread of cancer is so complex and expensive to study and the likelihood of success so uncertain. In the 1980s, Welch said, some senior cancer scientists openly discouraged research into metastasis, contending that focusing on early detection and treatment was more cost-effective.
Welch said, however, said he is encouraged by recent growth in the field: Membership in his society has grown from nine to 250 since 1998. In addition, his lab and others have begun to identify the genes that signal tumors to spread.
"You can say progress is not as good as it should be, but the public needs to know there has been progress," said Welch.
Dr. Judah Folkman of Children's Hospital Boston, who pioneered a new field of cancer medicine with his discovery that certain proteins can cut off the blood supply that tumors need to grow, said he understands why patients are frustrated. After all, it took 25 years from when he developed the first angiogenesis inhibitor until a drug company won federal approval for the first treatment in 2004.
"Americans are impatient," he said. "That's why we have so much progress." Indeed, that impatience has spurred advocacy groups to invest more in research directly. Giusti's multiple myeloma group, for example, has created its own tissue bank to provide researchers across the country with samples of multiple myeloma, and an increasing number of patients are donating money earmarked specifically for metastasis studies. Komen for the Cure, meanwhile, recently announced plans to invest $600 million "to find wild ideas that will break the mold" in treatment.
Folkman, however, said there is no substitute for the funding from the National Cancer Institute that has fueled basic cancer research since the 1970s. The federal budget freeze since 2003 translates into a 12 percent reduction due to inflation, resulting in more research proposals being rejected. Consequently, Folkman said, young researchers are leaving the cancer field at a time when science needs their new ideas.
Folkman said cancer has repeatedly surprised scientists with its resilience and complexity. In his field, scientists had once hoped that blocking the action of a single key protein called VEGF might be enough to shut down tumors' blood supplies, but now realize there are at least six proteins that help tumors form blood vessels. As a result, drug companies are now developing angiogenesis inhibitor medicines that attack three or more of the proteins at once, increasing the odds of driving cancer into remission.

Still, Folkman said he's encouraged by what he has seen in human testing, including at least one case in which doctors successfully used angiogenesis inhibitors in a patient who doctors said was at high risk of metastasis. The patient is still metastasis-free several years after his physician had predicted.
"When people say there is no progress and they are all gloomy, I don't say anything," said Folkman. "I know about things in the lab that are exciting."
So far, cancer researchers have had difficulty turning promising ideas into treatments. Their drugs take longer to win federal approval than other medicines and are more than twice as likely to fail, according to a September report by the Tufts Center for the Study of Drug Development. The Tufts study found that 92 percent of proposed cancer drugs that reach human testing are abandoned before they win approval.
"It's the siren call of science," said Kenneth I. Kaitin, director of the Tufts drug development center. "The science of cancer drug development suggests that the cure is right around the corner and we can never quite get there."

Monday, December 03, 2007

Heaven has two new Angels

This past weekend the earthly world lost two beautiful Neuroblastoma fighters, but heaven gained two new Angels with open arms.

I first heard about Kayla Weber who was born on August 30, 2006. She was diagnosed with Neuroblastoma at the age of 4 months. Normally cancer is a disease that if you catch it early enough, you can beat it. With NB all those rules fly out the window. Even when Isabella was first diagnosed, the belief was that if your child was under a year old when diagnosed, the survival rate was at least 90%. That has since been proven wrong, and unfortunately our friend Kayla will never get to see her 2nd birthday.

Her mom has an amazing story online, here is the link:

It's amazing how many lives she touched in her short time with us. Her mom also posted many videos on You Tube, just search Kayla Weber and you fill find lots of videos honoring this beautiful angel.

Then just today I heard about another angel, Matthew Hower who passed away on Saturday. He was diagnosed with stage 4 NB in April of 2003 when he was 3 1/2 years old. He fought the cancer for 4 years and as a family member of his said, "No more pain, no more pokes, no more pills." If you would like to leave a comment for the family, their site is :