My beautiful niece Gracie was recently diagnosed with Neuroblastoma (cancer). It is still early in the diagnosis and we are awaiting results to know more about the fight that Gracie will face. I've created this blog as an outlet for friends and family to stay informed about her journey and a way for friends and family to make anonymous contributions towards her care and the mounting expenses her family will face. Gracie is a fighter and the bravest 3 year old I know. Hundreds of people love you Gracie and are praying for you. "Be strong and of good courage for the Lord thy God is with thee" Joshua 1:9

Wednesday, July 20, 2011

International Neuroblastoma Awareness Week




This week is International Neuroblastoma Awareness week. It is also Gracie's 5th birthday July 25th. I cannot think of a better gift than to donate your lunch money for one day, toward research for a cure!! even a dollar adds up if enough people do it!

you can donate in the following ways:
*Online at www.lunchforacure.org by credit card, debit card or electronic check. on the site, you can find gracie's tree and add an ornament for every 5 dollars donated. just put Gracie's name on the donation page.
•By calling 1-877-883-7464.
•By sending a check or money order to:
•The Neuroblastoma Foundation
•3704 Hamilton Ave
•Fort Worth, TX 76107

the Neuroblastoma Foundation is a 501(c)(3) public charity. Their donations are tax-deductible to the full extent of the law. Then provide them with the Neuroblastoma Foundation tax ID number: 26-4373250.
Who do you know that might give up a lunch for kids with neuroblastoma? Please forward this to them :)
thank you and we love you!

What is Neuroblastoma?
Neuroblastoma is a solid tumor cancer that arises in immature nerve cells and strikes primarily infants and children. It is the most common cancer affecting infants with an incidence rate of almost double that of leukemia. Its cause is unknown. Nearly 70 percent of children diagnosed with Neuroblastoma have advanced-stage disease. Less than 40 percent of children with advanced disease live five years.

Neuroblastoma is a solid tumor-a lump or mass-originating from neural crest tissue that is part of the sympathetic nervous system (SNS). This part of the nervous system is responsible for the "fight or flight" response when stress occurs. Nerves of the sympathetic nervous system run parallel along the outside of the spinal column and connect to organs. Since neuroblastoma arises at the interface between the nervous system and the endocrine system (the hormone producing organs-it is one of the few cancers that secrete hormones), it is also included in the class of neuroendocrine tumors.

The most common place for neuroblastoma to originate is on the adrenal glands located above each kidney (40 percent of localized tumors and 60 percent of wide-spread disease). Neuroblastoma tumors can also develop in nerve tissues in the neck (1 percent), chest (19 percent), abdomen (30 percent non-adrenal), or pelvis (1 percent)-anywhere along the chain of the sympathetic nervous system. In rare cases, no primary tumor can be discerned.

"Neuro-" indicates origin in nerve cells, and "blast" means immature cells. Normal "neuroblasts" (baby nerve cells) begin in embryonic tissue and grow and mature into functioning nerve cells. Neuroblastoma means the immature cells reproduce forming a mass and do not develop into functioning cells (the "-oma" ending denotes a tumor). Neuroblastoma is not a cancer of the central nervous system (CNS) and it is not a brain cancer, but occasionally it metastasizes to the CNS. There are over 50 kinds of pediatric cancers that fall into 12 main categories, one of which is the sympathetic nervous system cancers. Neuroblastoma accounts for more than 97 percent of all sympathetic nervous system cancers.

Neuroblastoma is a very rare cancer
Of approximately 13,000 new cases of childhood cancer in the U.S. each year, only about 650-700 are neuroblastoma. There is similar incidence in other countries and no clear differences between ethnic groups. About 55 percent of all neuroblastoma patients are boys.

Understanding that neuroblastoma is a rare disease is important. Many pediatric oncologists see few neuroblastoma patients. You are entitled to ask how many neuroblastoma patients your hospital treats, to consult with pediatric oncologists and surgeons who specialize in neuroblastoma, and to get all your questions and concerns answered to your satisfaction.

Neuroblastoma is a pediatric cancer
Neuroblastoma generally develops in young children. The median age at diagnosis is about 2 years old. Numerous children are diagnosed after age 2, but the number of diagnoses decreases as age increases. Adult diagnoses of neuroblastoma are extremely rare but not unheard of.

The cause of Neuroblastoma is unknown
Although the cause of neuroblastoma is unknown, most physicians believe it is an accidental cell growth that occurs during normal development of the sympathetic nervous system.

Sunday, July 17, 2011

family vacation

Gracie has been eating well (for her) these last couple weeks. Her weight is not up nor down but holding steady. :) She likes to eat a lot of cereal, cottage cheese, refried beans, yogurt, pudding and mac n cheese.
We just got back from a 2 week vacation to Idaho, Yellowstone, and Moab. Gracie did really well and was playing like a regular kid. It was wonderful.
Gracie hiked some of the way to delicate arch. it is a mile and a half each way, so obviously that was out of the question to have her do! and who wants her burning that many calories anyway!! haha. Brandon carried her most of the way up. I carried Von some of the way up and Brandon would take Gracie up a ways and then come down and pack Von up. back and forth cause I was a wimp. lol then he carried Von down and I carried Gracie. She was much easier to carry than Von! that 5 less lbs made a huge difference.
Gracie at sand dune arch. The kids loved this arch for all the cold sand. we were lucky to be there when the weather wasnt too hot like it usually is in July. we did the hike to delicate arch and just got done with sand dune arch when it started to rain. we went swimming at the Rv place and then dinner and shopping! We had a great time visiting a lot of our family and I was pretty emotional talking with them about her. It is so good to be at this place in treatment. the end!! We were able to have such a wonderful trip with a new outlook on life. the kids all did awesome and we all enjoyed every bit of it.
a funny/cute thing I wanted to add. Gracie and Chloe have been playing with their toys and Gracie will tell Chloe to be the DR and she takes her toys to her and says they have cancer. She tells DR Chloe what needs done, surgery etc. then Chloe said "OK the cancer is all gone!!" Gracie said "are you sure? you better do a donut scan" (donut scan is what she calls the CT scan cause it looks like a big donut) well, Dr Chloe did the donut scan and all was clear! :)