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.
Gracie started Daisy scouts last week and she loved it! She keeps saying "scouts is fun!" She is so excited to go again this week!
Gracie's hair is growing so fast! and it is long enough for little pigtails again. She is looking so grown up. We drove down to Ft Worth yesterday and left at 5 am. got there at 10 and checked in. They had her start with the gatorade drink that has the contrast in it. she is supposed to drink it a little at a time for 2 hours. This is where the G button comes in very very handy! I just hook er up to the tube and she doesnt even have to drink any of it. :) then they were running late, so they didn't call her back til 1:45 and then they did an IV for the IV contrast, which I had forgotten about since every other time, she had a port or central line. She was not happy about it at all but she held still through the tears. Once that was done, we waited another 1/2 hour and then it was finally her turn. She held real still for the CT and it was very quick. After it was done, she got the IV out and we went to eat. It was about 3:00 and we were starving. I never eat when she can't eat. She wanted one of everything it seemed. we got, pizza, turkey, loaded baked potato, doritos and candy bars to share. Aftere that we went to the Build-a-bear at the hspital. Cook Children's is the first hospital to get one and it is great. I was just going to let her get an animal without an outfit, but that was before the IV i didn't know about. :) lol so she got a much deserved dress to go on her new bunny, named "bunny" haha. We stopped back by radiology to get a copy of the scan and then headed home. We got home around 8:45. I gave the Cd to Brandon to look at and he said he didn't see anything as far as he could tell, and there wasn't a report yet. So today I called and asked if the report was done and it was. The results? NO evidence of disease!! We are so very blessed that She remains disease free and she is healthy and strong. Most days she doesn't even need tylenol. Thank you all for your continued prayers. We love and appreciate you so much! We will go down for clinic on Monday, so glad we don't have to wait til then for the results. She will just have labs and visit with the doctor.
