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What started out as a site to update on our daughter's cancer has thankfully grown into a site to update on our beautiful family of four. Enjoy our journey...

Wednesday, May 02, 2007

let's be refreshed....

I found this information from other various NB sites. I just thought I would post some information about the illness for those of you who just started to read about Charli. Awareness is key in fighting = knowledge = power.

"Nobody made a greater mistake than he who did nothing because he could only do a little."
Edmund Burke

February 4th is World Cancer Day and September is National Childhood Cancer Awareness Month. While these dates bring short attention to the cause it is the everyday work year round that brings the real progress.

Cure For Neuroblastoma
"Hope and inspiration in the smallest packages"

What is Neuroblastoma?
Neuroblastoma <> (NB) is a rare cancer of the nervous system striking about 600 children in the U.S. per year. Neuroblastoma is a solid tumor cancer that begins in the nerve tissue of the neck, chest, abdomen, or pelvis but usually originates in the abdomen in the tissue of the adrenal gland. It's a form of cancer that occurs in infants and children, is rarely found in children older than 10 years. There are many angles of causes being researched but the main idea is that cells of this cancer usually resemble very primitive developing nerve cells found in an embryo or fetus.

There is very little known about why neuroblastoma occurs, or about what factors increase the risk for occurrence and currently there is no known cure.

Seventeen years ago this was 100% fatal. While treatment is improving, the statistics are still sobering. In as many as 7 of 10 cases, the disease is not diagnosed until it has already spread (metastasized) meaning treatment is more intensive and has to start quicker. Prognosis for neuroblastoma is dependent on age, stage of disease, and the molecular biologic and cytogenetic characteristics of the tumor children have the best chance if they are diagnosed by age five (nearly (90% of cases are), and if it is in early stage (four stages in total). This is still a very tricky disease.

Over 50% of patients who go into remission will relapse and the chances of survival are even slimmer.

Facts About Neuroblastoma
Although cure rates are steadily increasing, 35% of children will die. Neuroblastoma tumors are the second most common type of solid tumor found in children (second only to brain tumors).The incidence rate for all sympathetic nervous system cancers was 9.5 per million children.

Neuroblastoma accounts for 14% of all cancers in children younger than five years of age. Nearly 70% of those children first diagnosed have disease that has already metastasized or spread to other parts of the body. The average age at diagnosis is two years old.

Facts About Childhood Cancer
Cancer remains the number one disease killer of children; more than genetic anomalies, diabetes, cystic fibrosis, and AIDS combined. Each year in the U.S., approximately 12,500 children and adolescents are diagnosed with cancer (around 35 a day).One in 330 children will develop cancer by age 20.Cancer in childhood occurs regularly, randomly, and spares no ethnic group, socioeconomic class, or geographic region. Childhood cancer is not a single disease, but rather many different types that fall into 12 major categories. Common adult cancers are extremely rare in children, yet many cancers are almost exclusively found in children. The cause of most childhood cancers are unknown and at present, cannot be prevented. (Most adult cancers result from lifestyle factors such as smoking, diet, occupation, and other exposure to cancer-causing agents). Attempts to detect childhood cancers at an earlier stage, when the disease would react more favorably to treatment, have largely failed. Young patients often have a more advanced stage of cancer when first diagnosed.(Approximately 20% of adults with cancer show evidence the disease has spread, yet almost 80% of children show that the cancer has spread to distant sites at the time of diagnosis). When cancer strikes children, it behaves differently from cancer in adults. Children frequently have a more advanced stage of cancer when they are first diagnosed.


Anonymous said...

A short 2 months ago, I hadn't ever heard of Neuroblastoma. You are getting the word out to
so many thru your blog. God Bless you for your courage and every effort you are making to let us all know that we have much work to do.

Anonymous said...

I too had never heard of this until I met you Brenda and you can BET that I've told more people than you can imagine about what it is Charli is being treated for. I hope that as a friend, I can do my best to spread the word with you. Thanks for posting this information. You're an amazing person and Mommy!

Anonymous said...


Anonymous said...

I received an email from Connie Hansen, in Coloroda, with your site. I just wanted to let you know that my 15 month old granddaughter, Adeline, was diagnosed with NB at 3 1/2 months, had surgery, 4 rounds of chemo & is statistically cancer free! Addie's tumor also involved the spine & was actively growing. The surgery had to be done & they removed as much as they could, but had to leave a piece they called a dumbbell. After chemo, the tag has shrunk to the size of the tip of my little finger & the last MRI showed no new growth! God is good! I know he has plans for Charli & our little Addie!

Remember to give Him all the praise for He truly deserves it!

Sandy Dean
Abilene, TX