 |
|||||||||||||||||
|
Sydney Jones was a precious 12 year old girl with many-many friends. She lived in Cupertino California. Sydney was diagnosed with Acute Myeloid Leukemia (AML) in April of 2008. She was immediately admitted to the Lucille Packard Children’s Hospital (LPCH) at Stanford University. Her Brother Keaton was found to be a 100% Sibling Bone Marrow match. With that, Sydney underwent a Bone Marrow Transplant, during her brief remission, we had thanked God and had cheered the success of this treatment. To our horror Sydney relapsed 72’ish days later. Doctors then told us that a 2nd transplant would not be a good option for her, as most of the kids who relapse so early, do not survive the 2nd transplant. At that point LPCH handed us the number for Hospice and conveyed that they would keep her comfortable in her passing. WHAT?! By this time, I had searched out the best of the best for Leukemia treatment. One such facility is University of Minnesota and a woman/nurse there named Barb Trotz, (Thank you Barb!). This facility is known to be an advocate for Umbilical Cord Stem Cell Transplants. By this time, I had spoken to Barb a number of times asking about Clinical trial options for Sydney’s specific disease. On this occasion, I was trying to verify what I was hearing from our doctors at LPCH. I asked Barb what the results were, for a child with AML, who has had a BMT transplant, and has relapsed under 90 days, who then went on to have a Umbilical Cord Stem cell transplant. Barb obliged and said she would get back to with some numbers. Two days later, I got a response. The summary was that, the average life span of that specific patient following the 2nd transplant was 2 months. NOT GOOD! We already knew that LPCH had seen one boy last 25 months on Non-Toxic Chemo, but I heard later that – that boy had not had a first transplant.. but we knew we had more than two months on Non-Toxic Chemo. I kept searching for other alternatives. Our medical team told me that they did not have the time or resources to search for other treatments and I would have to be the advocate for Sydney for find a treatment option. I found a Clinical Trial at St. Jude Children’s Cancer Hospital, which could benefit Sydney. It’s called a Haplo NK Cell Transplant. (Look it up J ). The fine people at St Jude’s graciously flew us out to Memphis Tennessee to have Sydney go through some tests to see if she qualified for the study. After three days, we found that she in fact did qualify, with one condition; she needed to get her Liver Enzymes down from 91 to 60 or below. When we returned to LPCH, in an effort to lower the Enzymes, they made some medication changes, but the level went from 91 to 174. NOT GOOD! We never made that study due to the domino effect of the illness taking its toll on Sydney. Sydney passed away on June 15th 2009 at 8:30am due to organ failure and I believe hemorrhage. She was 13 years old. Sydney did not necessarily pass from Leukemia; she passed from organ failure due to the toxicity of the Chemo’s administered to her. I am not blaming the medical team for administering Chemo, because those Chemo’s gave us many more months with Sydney. I do however blame the medical team for not looking at alternative ways to sustain the body and organs while receiving Chemotherapy. It’s not only our medical team; it seems to be a general ignorance of what is successfully working in other countries. What I have learned, thanks to Dr, Dana Flavin-Koenig is that in Germany, Vienna, Switzerland and other countries, they sustain and support the organs with natural food products, so that the organs can stay healthier while being hammered on by Chemotherapy. Here at the Eric Drew Foundation we feel that many Leukemia patients in America could benefit from eating and drinking healthier while being treated for Cancer. Our goal is to maintain a resource center on this website that will relay the latest in research pertaining to Natural foods and vitamins and their positive and successful effects on Cancer patients. Note to self: If I ever have to do this again, I would go directly to St. Jude Children’s Cancer center. Their tenacity and treatment options were stellar, and the doctors were patient and caring, and gave me more information than I could ever imagine. Welcome to the Sydney Jones Cancer Resource Center at the Eric Drew Foundation
|
||||||||||||||||
|