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: www.cookiesforkidscancer.org

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: http://docs.google.com/View?docid=dgwv485z_0c79ft8


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 : http://www.caringbridge.org/visit/howerfamily

Thursday, November 29, 2007

Christmas time already!

Here are some pictures from Thanksgiving that I wanted to share.
Hope everyone had a wonderful Thanksgiving. We all have so many things to be thankful for this year











Friday, September 28, 2007

Miss Gloria Strauss - A new Neuroblastoma Angel




Anthony Strauss, 5, holds his sister Gloria's photo high as he rides on the shoulders of family friend Andrew Barfoot during Gloria's funeral procession Thursday. More than 2,000 relatives, friends, students and strangers attended the funeral and celebration for Gloria, 11, whose battle against cancer was documented in a Seattle Times series. Events were held in the gym at Kennedy High in Burien, where Gloria's dad is a teacher and coach.
© 2007 The Seattle Times Company







Doug Strauss is greeted by friends during the funeral for his daughter, Gloria, who died after a four-year battle with neuroblastoma.
© 2007 The Seattle Times Company




















I found the two pictures on the Seattle Times news web site. A journalist of the Times has been writing about Gloria for the last four months and has about 12 stories in his series of articles. There are a couple pictures and slide shows of his time with her as well, which would bring tears to the coldest hearted person's eyes.


Here is a link to one of the stories and along the right there are the links to the rest of Jerry Brewer's time with this beautiful little girl.

http://seattletimes.nwsource.com/html/localnews/2003909376_gloria28.html



Here is the YouTube Video as well...



Monday, September 24, 2007

The Loneliest Road Campaign

On September 10th 2007, five fathers from around the globe started on a grueling adventure in hopes of saving the lives of their children and others affected by a devastating pediatric cancer known as Neuroblastoma. This prominent pediatric cancer is not hereditary, a known byproduct of some industrial/ecological waste, it is merely unexplainable.


Standard treatment protocols around the globe offer little hope. Stage IV patients such as our children have a 20% survival rate. Innovations in immunological therapies have raised the bar however they do have complications. Recently it was brought to the attention of parents by the fields leading scientist's that a complimentary, far less symptomatic antibody could be manufactured, however the funding was unavailable. Depressed, angry, but excited for the possibility we asked how much would this cost? 2-3 million dollars! Ultimately this is the monetary value placed upon the lives of 150-300 children who could directly benefit from this antibody each year.

In hopes of making a difference, we parents are taking a stand!

What is the Loneliest Road? The loneliest road makes up part of our ride along Hwy 50 better known as the loneliest road in the United States. It is well off the beaten path and at times offers little evidence of any human life. Fittingly the name relates to the daily challenges, our families, and particularly our children's face in eyes of this devastating disease.

We will begin in Sacramento CA and collectively ride 3700 miles, 24 hours a day, 7 days a week to Washington DC where we will unite with other Neuroblastoma families, showing our strength in numbers ensuring social awareness is gained.

We are tirelessly committed to this challenge. Outside of our children’s hospital rooms we are training hard, day and night, whenever a free moment becomes available. Each rider will be equipped with GPS tracking devices to follow our progress and be keeping daily blogs concerning our ride. Our support staff is just as committed. Together we aim to cause a media buzz/frenzy, which will help gain the crucial philanthropic funding necessary for the development of the antibody. We beg for your help and your support. Please check back with us daily and spread the word. We invite you to be part of our children’s lives and our family’s adventures (please see our children’s individual websites which outline our daily struggles, routines and treatments).

Respectfully, The Five Fathers





Routes:
California

San Francisco (Media Events)
Sacramento (Take US 50 from Sacramento to Reno)
Go North and pass to the east of South Lake Tahoe

Nevada

Reno (Take US 50 from Reno to Salt Lake City)

Utah

Salt Lake City (Take Route 40 from Salt Lake City to Denver)

Colorado

Denver (Take Route 36 from Denver to Kansas City)

Kansas

Kansas City (Take Route 50 from Kansas City to St Louis)

Missouri

St Louis (Take 50 to Route 150 into Louisville, KY)

Kentucky

Louisville
Lexington

Virginia

Blacksburg, -Virginia Tech
Roanoke (Take Route 460 to Lynchburg)
Lynchburg (Take Route 29 to Charlottesville)
Charlottesville (Take Route 29 to Route 28 to Route 50 Arlington Road)
WASHINGTON DC

************************************************************************************

Here is the link to their blog site that is upated during their journey : http://loneliestroad.blogspot.com/

Wednesday, September 12, 2007

Help Us Make A Difference!

below is an email I received from another mom who's child has now hopefully beaten this horrible beast. Please read the email below and watch the you tube video and check out her families myspace. Spread the word to raise awareness!

*************************************************************************
Friends,

Thank you for all your support and prayers for Lane through his battle with cancer. We think his battle may finally be over – yeah! We will continue to put updates on Lane’s web site as he undergoes future tests/scans, reaches milestones, etc.

Help us celebrate his life and so many other children that are or have battled cancer. September is Childhood Cancer Awareness Month. Watch this powerful video at http://www.youtube.com/watch?v=AGS4yE5v9rM and choose to make a difference – it’s as simple as wearing a gold ribbon and telling people what it signifies. For more ideas on how to help read “Lane’s Story: a story of struggle, hope and transformation”, which is saved as an attachment to this email. We also have a MySpace page (www.myspace.com/profkara) that is dedicated to raising awareness. Chili’s restaurant has committed to this cause. Take your family to Chili’s on Sept. 24. The restaurant is donating 100% of its profits from this day to St. Jude’s hospital for childhood cancer research. Information, childhood cancer statistics or a sample letter to write your government officials for increased childhood cancer research, can be found at http://www.curesearch.org/.

Please forward this email to all your friends and family. Help us spread the word about childhood cancer; it could save lives. Don't wait until tomorrow, make a difference today!

On behalf of Lane and other children with cancer, thank you for your efforts!

Celebrate life,

The Cunninghams – Todd, Kara, Lakin and Lane
www.caringbridge.com/visit/lane



Tuesday, September 11, 2007

Ryan's Journey

View this montage created at One True Media
Ryan's Journey


Danielle, the mother of Ryan McCormick, a SUPERMAN himself, created this slide show. If you have the time, please watch it. It's VERY moving! Here is the link to his CaringBridge site : http://www.caringbridge.org/visit/ryanmccormick

(please see my disclaimer above about my postings this month)

Thursday, September 06, 2007

September is Childhood Cancer Awareness Month

I just needed to share this story I found online by doing a 'Google' search on the term "Childhood Cancer Awareness Month"

Here is the link to the story : http://ezinearticles.com/?Childhood-Cancer-Awareness-Month-is-September&id=63120


When September rolls around, I look like any other haggled parent standing in the checkout with three kids. The shopping cart is filled with packs of pencils, note paper, crayons, markers and tissues.

"Why do we need to buy tissues for school?" my kindergartener asked last year.

I pictured a whole class of five-year-olds with runny noses and was tempted to reply, "So kids won't use their sleeves." But I chose the logical, "For when your nose is runny."

My neighbor claimed it would be a busy year when she found out I'd have one in kindergarten, one in first grade and one in middle school. But not busy enough, I thought, and again resisted the urge to let her know that I was wondering what my fifth-grader would be needing for school this year.

My fifth-grader, Daniel, never passed fourth grade. Or third, or even first. He didn't get a school supply list. Instead he got a kit from the hospital with syringes and bandages, all very sterile.

On Memorial Day Weekend, 1996, Daniel was three and diagnosed with Neuroblastoma. After eight months of treatments, surgeries, prayers and hope, this bald-headed kid, who acknowledged he was a “Brave Cookie,” was ready to be a cancer survivor. But a staph infection entered his weakened body and we had to kiss him good-bye.

September-- now meaning for me, not only back to school, but Childhood Cancer Awareness Month-- has rolled around again and as I stand in line with my kids, I know why the supply lists include tissues.

Just the other day while joining other parents and children in the “shopping for school supplies frenzy,” a woman noticed the gold ribbon pinned to my t-shirt. “What’s gold for?” she asked. “I know that pink is for breast cancer.”

“Children,” I said. “Gold because our children are golden to us.”

I half expected her to show shock or horror, being one of the thousands who refuses to believe that cancer is the number one illness among children. One of those who has no idea that each year one in every 330 kids will be diagnosed with cancer before age 19.

I was ready for her to walk away from me down the aisle. Instead she mouthed the words, “Did a child of yours…?”

“Yes,” I said. “A son who would be ten now. He didn’t survive.”

Her eyes showed tears, causing mine to fill. Then this woman—a stranger--touched my arm. “I am so sorry.” She smiled at my other three children. “They are beautiful. I’m sure your son was, too.”

If you see a mother wearing a gold ribbon on her shirt--the symbol of childhood cancer awareness---please ask her about the ribbon. The opportunity to talk will help with her healing and give you new wisdom. Be aware that she may cry. Feel free to hand her a tissue. Although she has done it before, she probably shouldn't be using her sleeve.

(Written in 2002)

Alice J. Wisler lives and writes in Durham, NC. She is the author of "Down the Cereal Aisle" and "Slices of Sunlight," both cookbooks of memories. Her free grief e-zine, Tributes, goes out to over 800 subscribers each month. Visit her web site: http://www.geocities.com/griefhope/index.html

Learn more how you can help childhood cancer research: Visit The National Childhood Cancer Foundation (NCCF) http://www.nccf.org

Article Source: http://EzineArticles.com/?expert=Alice_Wisler

Tuesday, September 04, 2007

Ensenada 2007

Here are some pictures from our trip this past weekend in Ensenada. That is why we have been MIA.... =)

Sunday, August 19, 2007

Coins4kids.org

A friend of mine came across this really great site that is doing an amazing job of razing funds for the Children's Neuroblastoma Cancer Foundation. Click on the following link to take you to their site : Coins 4 Kids There is a link to 'Meet the Kids' where you will see many of the same kids I have links to on the side, and you will find many others that I have not added yet. Neuroblastoma affects so many kids, it's hard for me to keep up.

Want to get a head start on your Holiday Shopping this year? Coins 4 Kids also gives you information about a little known site called iGive.com which donates a certain percentage of your purchase to the cause of your choice and CNCF (Children's Neuroblastoma Cancer Foundation) is one of those choices. It's super easy to sign up and you get monthly newsletters telling you about new online stores that have signed up. Stores like the Macys, Ann Taylor, Disney Shopping, Nordstrom and The Children's Place. The list goes on and on, so if you shop at these places any way, why not do it and know your giving to a good cause at the same time?

Anyway..... back to Coins 4 Kids.... I got this little bit from the about us portion of their site.......

Greg & Jon Maher



"Hi, our names are Jon & Greg Maher and we are from Libertyville, Illinois. Before our little cousin Dawson was diagnosed with neuroblastoma, our awareness of childhood cancer was an occasional donation can at a store. We didn't realize the personal stories and the devastating effect that cancer has on thousands of families. Research studies that show promise of finding new treatments and cures are many times left to lapse because there is not enough money to keep them going. Did you know that although many broad cancer societies do great things, very little of their resources go to pediatric cancers? We have founded Coins4Kids to help change this and are working in association with The Children's Neuroblastoma Cancer Foundation (CNCF). Donations go to the most promising neuroblastoma research studies."


Amazing that these young men are such giving of their time to this wonderful cause. It is wonderful that they are spreding the word to raise money for pediatric cancer. Here are some facts below...

Did you know?

The American Cancer Society provides only 1.85% of dollars spent on research, to be spread over all 12 types of childhood cancers. (*July 2005, Research Department, American Cancer Society, Inc.) Following is an excerpt from a newspaper article written by a Neuroblastoma Father:... if you had donated $100 to Relay for Life hoping to show your support for the honorary chairpersons, $12.50 would have gone to research adult cancers, while only 70 cents would have gone to childhood cancer research. How much of that 70 cents would be for neuroblastoma research? None! "...."If you see a bald child suffering from cancer and feel compelled to help cure childhood cancer, please research organizations that put children first and support those organizations."

In the past 20 years, only one new cancer drug has been approved for pediatric use. Only 3 percent of the budget from the National Cancer Institute goes towards Pediatric Cancer Research. September is Pediatric Cancer Awareness month, which nationally goes largely unrecognized. The government recently cut the budget for Childhood Cancer Research.14,000 children will be diagnosed this year with cancer. Currently there is between 30-40,000 children being treated for cancer in the US. Pharmaceutical companies fund over 50% of adult cancer research, but virtually nothing for kids.

Pediatric cancer research does not receive nearly as much funding as adult cancer research projects. Neuroblastoma research dollars are scarce as most money is diverted to well-publicized adult forms of cancer, such as breast and prostate.

Historically, advances in pediatric research have yielded treatment models and genetic information that greatly benefit adult cancer patients. (This is well documented by professional research cooperatives like the Children's Oncology Group); the reverse is not always true.

interesting video

Here is a video I found on You Tube about our little town we call home. Give you an idea of how small our little patch of heaven is. =)


Tuesday, August 14, 2007

Scans

I wanted to put a quick update so that everyone didn't think that I was keeping them in the dark about Isabella's scans.

Isabella had the MRI last Wednesday while under anesthesia and all went well during the scan. Then on Thursday she had the hour long MIBG without anesthesia! woohoo! =) Then on Monday she had her 30 minute bone scan, again without anesthesia. Bone Scans may identify fractures, areas of growth, arthritis, tumors and infections that won't show up on an x-ray. The part about growth you really have to remember during the scan because all areas of the bones that are growing will show as a hot spot, so on Isabella you will see hot spots on the knees, shoulder blades and any where else where her bones are growing because she is a growing child. =)

On her last bone scan 6 months ago and this one as well, she showed increased uptake on her left ankle/foot. They sent us down to get an x-ray after the bone scan was completed to look for any stress fractures or maybe even arthritis. The Nuc-Med tech told me that cancer does not usually spread to the feet and so this was no need to worry. I also imposed the question to my support group list for Neurblastoma parents and was advised that yes, that is most of the time the case. Cancer does not usually spread to the feet, but as other people have stated, NB does not follow the same rules as other types of cancer. So we as parents have to stay vigilant at least for the sake of our children. ;o) So now we will wait to meet with the doctors to go over the results. Once we have met with them, I will let you all know the final word from this next round of tests. =)

Thank you for checking in on us!

Friday, August 10, 2007

Happy Birthday David!!

Happy birthday to a wonderful husband, who is always there for me and loves me unconditionally. You play with the kids and make them laugh and giggle. You are a wonderful father and my best friend. I know I am a better person because of you, my dad even told you that himself when he was still alive. Our family wouldn't be complete without you!

Thank you for everything you do!

Your wife

Wednesday, August 08, 2007

Scan time again...




Isabella just had her MRI today and tomorrow she will have her MIBG scan, then on Monday she has her Bone Scan. I will let you all know the results once we have them. They have been clean since 2005 so I expect they should be clean now. We will continue to pray that they are.

I wanted to share some pictures from the past week of our little boy.... he is getting so very big.


Sunday, August 05, 2007

The Battle of Thermopylae

Here are some videos from You Tube about The Battle of Thermoylae, what the movie '300' that just came out on video is about. For those of you that have heard that this movie is nothing but blood and guts, just go out there and see it, for you will see that it is more than just violence. It tells an amazing story about the Spartans who loved their freedom and their country so much that they did not care how many enemys were staring them in the face. Very inspiring story. I would like to go to Greece now and see where this battle took place around 480 BC.


Video 1


Video 2


Video 3


Hope you enjoyed the videos as much as I did, especially after watching 300.

Thursday, August 02, 2007

The Loneliest Road Campaign

below was taken from the Our Cause page on The Lonelist Road Campaign site...... Please take the time to read about the worthy cause to save children with Neuroblastoma. Please Please spread the word to everyone you know.....




On September 10th 2007, five fathers from around the globe will partake on a grueling adventure in hopes of saving the lives of their children and others affected by a devastating pediatric cancer known as Neuroblastoma. . This prominent pediatric cancer is not hereditary, a known byproduct of some industrial/ecological waste, it is merely unexplainable.


Standard treatment protocols around the globe offer little hope. Stage IV patients such as our children have a 20% survival rate. Innovations in immunological therapies have raised the bar however they have complications. Recently it was brought to the attention of parents by the fields leading scientist that a complimentary, far less symptomatic antibody could be manufactured however the funding was unavailable. Depressed, angry but excited for the possibility we asked how much would this cost? 3-5 million dollars! Ultimately this is the monetary value placed upon the lives of 150-300 children who could directly benefit from this antibody each year.


In hopes of making a difference we parents are taking a stand!


What is the Loneliest Road? The loneliest road makes up part of our ride along Hwy 50 better known as the loneliest road in the United States. It is well off the beaten path and at times offers little evidence of any human life. Fittingly the name relates to the daily challenges, our families, particularly our children face in eyes of this devastating disease.


We five fathers will begin in Sacramento CA and collectively ride 3800 miles, 24 hours a day, 7 days a week to Washington DC where we will unite with other Neuroblastoma families, showing our strength in numbers ensuring social awareness is gained.


We are tirelessly committed to this challenge. Outside of our children’s hospital rooms we are training hard, day and night, whenever a free moment becomes available. Each rider will be equipped with GPS tracking devices to follow our progress and be keeping daily blogs concerning our ride. Our support staff is just as committed. Together we aim to cause a media buzz/frenzy, which will help gain the crucial philanthropic funding necessary for the development of the antibody. We beg for your help and your support. Please check back with us daily and spread the word. We invite you to be part of our children’s lives and our family’s adventures (please see our children’s individual websites which outline our daily struggles, routines and treatments).


Respectfully, The Five Fathers


*************************************************************************************

Monday, July 30, 2007

The Great Eight

I was informed that I was tagged a couple days ago.... so here goes! =)

Miss Louann tagged me. She has a cute picture at the top of her blog of her hubby and her 2 boys and they live in the Philippines.

The rules:


1. Let others know who tagged you.
2. Players start with 8 random facts about themselves.
3. Those who are tagged should post these rules and their 8 random facts.
4. Players should tag 8 other people and notify them they have been tagged.



So lets see if I can think of 8 things that are interesting about myself.... =) This may be hard for me! hehehe


1. I love photography. My husband and I like to take drives into the mountains and take pictures of the scenery and our kids. It's a lot of fun learning new tricks and techniques. I would really love to get one of those Canon or a Nikon professional cameras with different lenses. I don't know a lot about it but I'd love to learn.

2. When Isabella was going through treatment, I really wanted to go into the nursing profession. Especially pediatric oncology, because those nurses are extremely giving of themselves and what they do for those kids. You go into the office and you think that your child is their favorite because of the way they shower your child with attention. But then you see them do that with all the kids and it just amazes me that our nurses were so wonderful.

3. There are a lot of things I would like to do, for some reason or another I never get it done. I am starting to notice this about myself and I really don't like it. =(

4. I was adopted by my parents at the age of 3 weeks old. I do not know my birth parents names or anything else other than some demographics. Including their height, weight, hair and eye color when I was born. I have never tried to find them and sometimes I don't care to, not only because I have great parents and a wonderful family. But there are times that I wonder if I have any brothers or sisters and do I look like them (my parents). I would like to know my medical history especially considering what happened with Isabella. Unfortunately I never know where to start and it all seems really confusing so I just end up giving up that idea. (see what I mean about #3)

5. There are a lot of places I think I'd like to live... I'm always telling my husband... lets move here, lets move there... but in the end would I like it any better than where I am now? =)

6. I love the weather. My husband makes fun of me because I could sit and watch the Weather Channel all night long if I could. I'm always on my computer when a thunderstorm is approaching trying to predict if I think it will hit us. I probably go to weather.com at least once a day to check what is going on right now and what the weather will be like tomorrow or this weekend.

7. I love to watch football. Ever since I was a kid I used to sit in the living room with my dad and or my mom and watch the 49ers play. I was a huge Joe Montana, Jerry Rice and then Steve Young fan and I always thought I knew everything about them. Now I am married to a man who grew up loving the 49ers as well and Jerry Rice. So we watch football together during the season and now our favorite team is the San Diego Chargers since we lived there for a while.

8. I am a Harry Potter fan. I just finished the last book last night and I really liked it. Made me wish i was a wizard. hehehe I would like to get a hold of all 7 books that were released in the UK as well and see if there are any differences from the ones released in the US.

Now I am tagging 8 people : The King's Mama, Brenda, Scottsdale Girl, ---- Well, it seems that I don't know 8 people to tag... so 3 will have to do for now. I may know one other person, but I don't have their link handy... =)



Okay I found my 4th link..... I am also tagging Yas! Luv ya!

Saturday, July 21, 2007

Thursday, July 19, 2007

Birthday Boy!



Here is a picture taken this morning.... waking up the birthday boy bright and early. He knows when you are taking his picture now and gives you this smile.....

Tuesday, July 17, 2007

Happy 1st Birthday Little David!

A look back and Little David's first year. It's amazing how much they change. =)
Welcome to the world, our beautiful baby boy!
July 19, 2006

Little David's first Zoolander pose
August 2006


THE cutest gummy smile
September 2006


A bumpy ride through a corn maze at the local farm
October 2006


Thanksgiving monkey suit
November 2006


He will kill me later on for this one. =)
December 2006



Enjoying bath time
January 2007


Trying to crawl
February 2007


Standing up on his own, 7 months old.
March 2007

Enjoying some food in his high chair.
April 2007



Sporting his Preppy look at his Uncle's graduation.
May 2007


Having Fun with his bottle.
June 2007

Showing off his new hair cut with a big smile.
July 2007