Our Story
My name is Kai Jones. I am twenty-one years old and am in my first year of pharmacy school. On May 28, 2010 my mother had surgery to remove a tumor from her colon; her 58th birthday. At that point diagnosed with stage 4 metastatic colon cancer and given six to nine months. Now, the vast majority of you who are reading this do not personally know my mother or the line of strong women she comes from. Her mother is 92 and still gardens, chops wood, and mows her lawn. The only times I have seen her look broken down are when my mother's older sister was diagnosed and passed away from small intestine cancer and now with my mother fighting her own battle. She won her own battle right before I was born when she beat breast cancer. Her strong example and the never quit attitude that my grandmother passed to my mother has been a huge aid in her fighting and until recently doing extremely well. With a strong will, a loving family, and aid from her alternative medicine clinic and oncologist she did extraordinarily well for eighteen months. The past two months have not been as good for her. Her chemotherapy was changed to help combat the fluid that had been building up in her abdomen and more recently in her lungs. The hope was to change to an agent that would control that and limit the number of times she had to have the fluid drawn off and risk complications. Unfortunately after that change was made the tens of small tumors that surgeons could not remove due to their size in the initial surgery grew rapidly. For the past two months she has been in the hospital almost constantly. She unable to eat more than a couple of bites every several days due to pressure and nausea and is vomiting badly some days. She is ready to come home and get back to the way things were, as am I and the rest of my family.
The Impact
Any money raised is going to go towards helping our family purchase a new drug called vemurafenib. This is a kinase inhibitor that specifically targets the B-Raf gene. When the B-Raf gene is mutated it can lead to cancer. This particular mutation is found in 80% of skin cancers and was therefore tested on skin cancer patients and approved by the FDA for the treatment of skin cancer. My mother's cancer is B-Raf mutated, which occurs in 8% of colon cancers. Due to the fact that the FDA approves drugs for conditions and not their root causes medicaid, or any insurance, will not pay for the drug for my mother despite the fact that it would work to stop growth and reduce the size of tumors the same way it does with B-Raf mutated skin cancers. At this point surgery is not an option that any surgeon has opted to take on because tumors like her's "glue" the abdominal region together and make it a very difficult procedure. Since doing this would not cure the cancer they are not willing to take the risk to give her more time to fight and more chances to find the best treatment to help her beat it. I have looked up several trials for other kinase inhibitors that could have the same benefit for her, but due to the chemo that she was switched to in order to help contain the fluid build up she is not eligible for those trials. Her oncologist has spoken with me and has said if we can get the drug he would be more than willing to give it to her. Getting it will give her a chance to at least get eating again and be able to come home and at most allow her to have surgery to remove the current tumors and keep fighting for a longer time until the numerous new medications and gene therapies in trial are approved.
Thank you all for taking the time to read this and God bless.
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