Please join us on Friday, July 4th for a 4 mile race through the neighborhood streets of Dedham. The event honors Sally Naser, a young girl battling a rare bone cancer. Proceeds will benefit pediatric cancer research at the Dana Farber Cancer Institute where Sally is a patient.
The course is USATF certified with accurately marked miles and fully staffed water stops at miles 1 and 3. There will be awards for age group winners (male/female): 18 & under, 19-29, 30-39, 40-49. 50-59, 60-69, and 70+. Wheelchair racers welcome. The top 3 male and female finishers will receive a pair of running shoes from Charles River Running.
Post race beverages and entertainment. The grills will be fired up with hot dogs and hamburgers provided compliments of Chef Angelo from Tutto Italiano.
Race Details: July 4th, 9:00AM. Fairbanks Park, 177 Rustcraft Road, Dedham (across from the Red Cross). Race day registration opens at 7:00AM. Fourth of July Dedham road race to benefit bone cancer research
When: FridayF July4th, 2014 9am
Where: Fairbanks Field, 177 Rustcraft Road (Across from the Red Cross) Dedham
To volunteer or become a sponsor or to help support the race, contact:
Robert Naser @ 781.883.8308 or by email at firstname.lastname@example.org
Thanks to Anne Francis Photography!
Four on the 4 th – Rally for Sally 2013 Course Map
Osteosarcoma research ?by richard Saltu S R esea R che R P R ofile I t’s often a challenge to develop drugs for rare forms of cancer; they are not widely studied, and recruiting enough patients for clinical trials is difficult. In these cases, “the key is understanding the biology of the disease,” says Katherine Janeway, MD, a pediatric oncologist at Dana-Farber/Children’s Hospital Cancer Center (DF/CHCC). Her goal is better treatments for osteosarcoma, a bone cancer that often strikes teenagers. “Progress in patient care is going to be very dependent on laboratory discoveries,” says Janeway, who heads the DF/CHCC bone tumor program, where she cares for patients. She also conducts research in a Dana-Farber laboratory, probing the biology of osteosarcoma. Every year in the U.S., osteosarcoma affects 400 chil - dren under age 20, as well as 200 young adults. Approxi - mately one-third of these 600 will ultimately die from the disease. The cancer is treated with surgery – sometimes requiring amputation – and chemotherapy. “There have been no new drugs for it in the last 25 years,” says Janeway. “There haven’t been a lot of breakthroughs in identifying targetable genetic mutations.” Osteosarcoma develops near the ends of long bones, such as the shin and thigh bones or the arm, during rapid growth. The tumors include primitive-looking bone- forming cells that grow chaotically rather than differenti - ate normally into specialized types of cells and tissues. Some drugs force primitive, malignant cells to “grow up,” forming differentiated tissues and curtailing their growth. Janeway asks, “Can we find a drug that can push osteosarcoma to look more like normal bone? If so, we could combine the drug with standard chemotherapy.” Using a method developed by DF/CHCC pediatric oncologist Kimberly Stegmaier, MD, Janeway has begun testing a group of 1,500 existing drugs, to see if they can force osteosarcoma cells to differentiate. So far, she says, some promising candidates have been identified and are under further evaluation. “If we don’t find anything, we’ll have to move on to a much wider screen that includes compounds that aren’t FDA-approved,” she notes. Failing that, it will be all the more important to search for clues within the cancer cells. “We don’t know enough about the basic biology of what blocks differentiation in osteosarcoma tumors,” explains Janeway. “We don’t know which gene pathway we should be targeting.” Because industry might not be willing to invest a lot in the search for a new drug for such a rare disease, says Janeway, “I think you can really argue that if you can’t find an existing drug, osteosarcoma is the type of disease where the initial work to develop a new therapy would need to be done in an academic environment such as Dana-Farber.” Every year in the U.S., osteosarcoma affects 400 children under age 20, as well as 200 young adults. Katherine Janeway, MD This article appears in the Spring/Summer 2012 edition of Paths of Progress , a magazine highlighting research and care at Dana-Farber Cancer Institute. To learn more, go to http://www.dana-farber.org/
About Sally ?
Sally Naser is young girl who has faced more adversity than any child should ever have to bear. Rather than dwelling on her own personal hardships, she lives her life each day full of enthusiasm, love, and hope. Sally lives in Dedham with her parents, Rob and Camille, older brothers Oliver and Evan, the family dog Bandit and her dog Zippy. She is a seventh grade student at Monsignor Haddad Middle School in Needham where she is an excellent student. Sally loves all types of animals and has endless energy for crafts. One of her wishes is that someday she will be able to swim with dolphins.
The Initial Diagnosis
In May 2010, two weeks after her 10th birthday, Sally was diagnosed with osteosarcoma, a bone cancer. It is also referred to as osteogenic sarcoma. Osteosarcoma afflicts only 600 children each year in the US, or less than 5% of all pediatric cancers. Before seeing a doctor, Sally complained of knee pain that was initially attributed simply to a banged-up knee from soccer. However, the pain persisted and Sally was taken her to her primary care pediatrician. Thankfully, her doctor did not dismiss the symptom as “growing pains” (which too often happens with this cancer) and ordered an x-ray of her knee. He immediately referred us to an orthopedic oncologist at the Dana Farber Cancer Institute in Boston where she underwent a series of tests including MRI, CT scan, Bone Scan and x-ray to evaluate the extent of the cancer. A pathological review of the biopsied tumor confirmed her diagnosis as high grade osteosarcoma.
The treatment plan prescribed by her medical team consists of a combination of chemotherapy and surgery. The surgery necessitated removal of a significant portion of her right femur and the surrounding tissue. During the 8 hour operation, surgeons also performed reconstructive leg surgery using a prosthetic implant to replace the portion of her femur that was removed. Over the course of one year and after several setbacks, including permanent hearing loss as a result of the chemotherapy, Sally completed the initial treatment.
Although she had missed a full 9 months of school, Sally remained determined to stay at the same grade level as her friends – and she did through hard work and determination.
With the active phase of her treatment completed, Sally entered a monitoring period with periodic imaging and tests to look for recurrence or metastasis. It was a great blessing to have her return to school full time and seemingly turn the page on that difficult chapter of her life. However, this was not to be. In January, 2013, approximately 20 months without evidence of disease, a CT scan revealed two nodules in her right lung, presumed to be a metastatic recurrence of the osetosarcoma.
Due to lack of research in this area, there is no proven treatment plan for cases of recurring osteosarcoma. The only know effective treatment is surgery to remove the tumors. Any other treatment she receives (such as chemotherapy) is experimental and or based on anecdotal evidence from doctors experienced in treating the disease.
Together with the advice of her doctors, we decided on a plan to use two cycles of chemotherapy (cyclophosphamide / etoposide – each cycle being 5 days of chemo infusion and 14-20 days to allow for her body to recover) followed by surgery to remove the tumors and a margin of non-diseased lung tissue surrounding the tumors. The hope was that some chemotherapy would be beneficial and may further eliminate any micro-metastases not visible by imaging machines.
One week prior to her surgery, the doctors ordered another CT scan of her lungs. The news was not good. In addition to the two lesions on her right lung, a new lesion appeared on her left lung.
With few options, the surgery on her right lung went forward as scheduled. Because the surgery involves collapsing her lung, removing the tumors and palpating (feeling) the lung for other lumps, the invasive nature of the procedure and the extremely difficult (and painful) recovery period made any thought of a surgery on both lungs unreasonably risky. On April 5, 2013, Sally underwent surgery on her right lung.
From the surgeon’s perspective, the procedure went well. He was able to remove the two known tumors and preserve approximately 95% of her lung tissue. Further, he did not feel any other lumps in his examination of the remaining tissue of her lung. The only unfortunate event of the surgery was that one of Sally’s ribs was broken during the procedure, which is not uncommon but nonetheless painful. She spent the next 24 very difficult hours in the intensive care unit of Children’s Hospital at which time she transferred to 6 North, the ward with which we are most familiar with.
Sally impressed all the nurses and doctors with the sped at which she recovered over the next few days. Five days after surgery, she was permitted to leave the hospital and continue her recovery at home. She weaned off of the oxycodone within one week while at home and continues to recover well.
The tumor tissue that was removed was analyzed under a microscope. The report revealed two things: that the tumor was indeed osteosarcoma and that the two cycles of chemotherapy treatments had little or no affect in killing cancer cells. Given this information, further I.V. chemotherapy treatments using cyclophosphamide and etoposide are not justified.
As soon as she was well enough, Sally returned to school. We realize that this will only be for a short period until her next surgery date but a few days at school can prove to be more therapeutic than any medicine the doctor can prescribe.
We have utilized the 6 weeks between surgeries to research novel and experimental treatments, also known as clinical trials. By definition, clinical trials are unproven but with few options available, we are giving consideration to several of these studies.
On May 17th, Sally will undergo the exact same procedure for her left lung as she did for her right lung, something that is absolutely necessary but also very much dreaded. We hope and pray that the only tumor the surgeon finds is the one shown on the last CT scan and that there is no further progression of the disease.
Sally is a source of great pride and inspiration for her family and friends. She has faced this daunting childhood disease with incredible composure and grace. We are thankful to all those who have supported her throughout this ordeal and continue to support her through the “Rally for Sally”, cards, gifts, thoughts and prayers.
Sally’s Circle of Friends ($1,000 and up)
Sally’s Staunch Supporters ($500-999)
Sal’s Pals ($250-499)
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Four on the Fourth Race Committee
PO Box 226, Dedham, MA 02027
Exit 15A off Route 95/128 toward Rt-1A/Dedham.
Right on Elm Street at Legacy Place.
Left on Rustcraft Road to Fairbanks Park, 177 Rustcraft Road, Dedham, MA.
(latitude, longitude: 42.22325543, -71.702431).
Parking is available in nearby lots.