|
*** Update on Samantha: She will be having surgery 8-28 at 7:30am to resection the rest of the tumor. There is still 25% of the tumor left in there. E-mail us at samanthaloveslife@yahoo.com and check out my website at www.samanthaloveslife.org...still working on it though.
I want to thank all of you for making donations, you are our angels. Also, thank you all so very much for your support, encouragment, and prayers. We need prayers each and everyday.
Please pray that this is it and that her tumor does not come back or spead, and that her upcomming surgery goes well. Thank you again to everyone...from our hearts)*****
Hello everyone,
My name is Samantha and for those of you who don't already know me, to know me is to truly love me.
I LOVE bugs, flowers, animals of all shapes and sizes. I love to plant things, I have a very big heart and I always think of others. I love horses. I wear a smile from the time I wake until I fall asleep and most nights you will hear me laughing while I dream. I love life and I love making new friends. I am very dedicated to my very best friend, Sonny, whom I care for very much. I love school and I have a lot of wonderful friends there. I love to give hugs and to be hugged, and I love to snuggle...it's a big part of who I am. One day I want to work at SeaWorld, my big brother has inspired me :) I am loved beyond measure and I bless everyone's life that I enter into.
I was recently diagnosed with Juvenile Pilocytic Astrocytoma ( brain tumor/cancer), or JPA for short. I was diagnosed a week ago on the 9th of May, 2008, after being sick for quite some time. I had emergency surgery to remove the tumor the following day, May 10th, which was also my 9th birthday. I have some of the best Doctors at Rady's Children's Hospital, San Diego, taking great care of me :) My mom can't thank them enough for saving me!!!
The tumor was measured to be 5cm by 3 cm and growing in my cerebellum. My Oncologist said to imagine a skinny peach and I would be able to invision the size of my tumor.
My surgery ( craniotomy) lasted about 6 hours and I had to have two blood transfusions but all in all it went very. After doing another MRI they are not sure if they were able to get all of the tumor. I may have to have another surgery to resection the rest. I may also have radiation therapy in the near future along with MRI's every three months to watch for any new growth. I have hydrocephalus due to the tumor location but in time that hopefully will clear up with no complications. We have to keep a watchful eye on that as well. My vision is very bad due to all of this so I see an Ophthalmologist weekly now, and I have a new presctiption for glasses which will change every couple of months as my eyes are healing.I am now walking free of a wheelchair and a walker, I have made HUGE improvements. I still continue to have Physical Therapy weekly until my balance is back to normal...I love the first 15 minuites of it but dread the rest!!! Watchful waiting is what we will be doing. This will be a life long fight for me and so many others who are at battle with brain tumors. Brain tumors are cancer, they can and sometimes do grow back, and that's why it is so important that we raise money for research, scientists, and our doctors so they can help cure us of this disease.
My fundraising webpage is created to help fund the research for finding better treatments, therapies, and hopefully a cure for brain tumors. Because brain tumors are not all that common, they are considered to be an orphan disease, there isn't enough funding going in to research so here I am, along with my family, friends, and so many others asking people like you to find it in your heart to donate to a more than worthy cause. Every little bit will help and no matter how big or how small the donation,it all adds up, and we will be forever grateful to you.
These funds go directly to The PLGA Foundation, not to us. The funds are used in our fight against brain tumors. While my brain tumor is very rare and has the best prognosis, it is still a life threatening disease that I will live with for the rest of my life. There are many types of brain tumors and these funds will go towards research for all of them.
(Like most of you, brain tumors were not really a thought that crossed our minds. Of course we had heard of them at some point in time but nothing that really hit home, until now. Now realizing that because they are not all that common, beacuse they don't take front page, because they have now affected our little angel, getting the information out there is more important then ever before. I want everyone to be aware of what this disease is and how devestating it is, and how it's so very important to get any amount of donations that we can to help fight this aweful disease.)
We do realize that there are many, many, many worthy causes out there seeking your support and attention. We thank you from our hearts for your efforts and your support for this cause and helping us to one day find a cure for this disease.
We will be holding a fundraising event of some sort at my school and we will pass along the information in the event that you would like to join us :) Rick Carpenter, Store Manager for HOME DEPO on Fairmount Ave, will donate some coupons and other stuff for our fundraiser. We also have Applebee's working with us for a fundraising event in store involving flyers and food or tickets and food for a Saturday breakfast. I will update everyone on that as well. We also have our good friend, Will, who owns A&ALocknkey ( loknkey.com 619-255-9906) who will donate 10% of all proceeds when mentioning Samantha. We are very grateful to him and all of the other local business owners who I will be soliciting in the next few days :) We are also very grateful to you!!!
My family and I would like to thank all of you for all of the love, support, and prayers that have been sent our way. There are not enough thank you's in this world that could ever come close to how grateful we are.
What is PLGA?
PLGA stands for Pediatric Low Grade Astrocytoma and is the most common form of childhood brain tumor (ages 0-19). It can be life threatening depending on its location in the brain, and whether or not the tumor can be removed surgically. Its presence and potential growth carries substantial risks and without question the current treatments available all carry with them significant side effects. Brain tumors are the #1 cause of cancer death in children, and the #2 overall cause of childhood death behind accidents
What are the current treatment options for PLGA?
Current treatments are limited to surgery, chemotherapy and radiation. All three also often result in added critical complications and permanent adverse side effects due to the punishing nature of the therapies. Typically, surgery is the first option. Often times, the tumors are located in areas of the brain that make surgery impossible or are close to critical brain structures that make it too dangerous to fully remove the tumor. Chemotherapy for PLGA usually consists of a very long (15 months) regimen. Since these tumors tend to be slow growing, the idea is to continually attack the tumor over a long time period. Unfortunately, this is also attacking any fast dividing cell in the body whether tumor or not. Lastly, radiation is an option that many doctors try to wait as long as possible to use due to the significant impairment that it may cause the developing brain.
Why aren't there kinder, gentler, more effective treatments available?
There are a number of reasons for the lack of progress in PLGA. One of the principal reasons is a lack of funding for dedicated PLGA research. There are 280 different histological types of brain tumors. The little funding that is available for pediatric brain tumor research is spread far too thin over all the various types. As a result, we are raising dedicated funds for PLGA research
With much love and gratitude,
Samantha ( Manthabean) Bell and family
Here are some websites that you can visit to learn more:
http://www.fightplga.org/community/plga_heros
http://www.cancer.org/docroot/CRI/content/CRI_2_4_4X_Treatment_of_Specific_Types_of_Brain_and_Spinal_Cord_Tumors_4.asp?sitearea=
http://neurosurgery.ucla.edu/body.cfm?id=169
What about the drug companies and the biotech industry?
PLGA is an orphan disease. Although they are the most common childhood brain tumors they are relatively infrequent. Of the approximately 3,400 brain tumors diagnosed in this country each year, a little over a thousand will be PLGAs. This number pales in comparison to the 230,000 new cases of prostate cancer or the 180,000 new cases of breast cancer each year. From the drug and biotech company perspective, pediatric brain tumors are not a large enough market to justify the development cost of new therapies. Equally important, many companies are reluctant to even try their existing drugs in children because of the risk of an adverse event in a child which might bring negative publicity and impact their drug label as they go after the larger market opportunities. In a sense the risk/reward tradeoff is unfavorable for them.
Is Team Manthabean raising funds for a particular organization?
Team Manthabean is a supporter of a non-profit 501c3 foundation called the Pediatric Low Grade Astrocytoma Foundation (www.fightplga.org). The PLGA Foundation was started by four families who have children affected by a PLGA. Realizing that there was no research and progress being made to help save our children, we decided to join foundation dedicated to advancing PLGA research. All donations received through Team Manthabean will be funneled directly to the PLGA Foundation and go solely to PLGA specific research and search for a cure.
|
