Sunday, August 19, 2007

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 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


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