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DARAH

Darah

On June 17th, 2011, at only 12 years old, Darah was running the 100 m sprint Manitoba Provincial Track and Field Qualifiers when she crossed the finish line in a close second place. All of a sudden, from the sidelines, we could hear a "snap" and she tumbled to the concrete track. Judging by the placement of her leg on the track, Darah's femur was clearly broken. Hundreds of spectators were in disbelief. It all happened so fast and something just didn't seem right. Why would an otherwise perfectly healthy, competitive athlete, suddenly break her femur in mid-stride? Soon, emergency crews were on scene to stabilize her and rush her to the Winnipeg Children's Hospital. This was the beginning of what would be the longest, toughest fight for Darah. An elite athlete she was - playing AAA Female Hockey for the Manitoba Maple Leafs, Club volleyball for the Selkirk Royals, soccer and track. Her passion of playing competitive sports came to an abrupt halt.

On September 9th, 2011, after nearly three months, Darah was diagnosed with a very aggressive form of Ewing sarcoma, which often first rears its ugly head with a pathological fracture, such as in her case. She had been playing in the AAA Stars and Stripes Hockey Tournament in Minneapolis only a few weeks before and showed no sign of pain or weakness. As a matter of fact, she received an award for Player of the Game.

At the time of diagnosis, a very large tumor (20 cm x 8 cm x 9 cm) was found in the soft tissue of her upper left thigh. This was the cause of the weakening of her femur which caused it to fracture. She also presented with multiple metastatic lesions in her lungs, and for those that know about Ewing sarcoma, once it has metastasized beyond the local origin, the chance of survival decreases from 70-80% to less than 30% in 5 years. Despite the odds, Darah continued to fight a quiet yet tenacious battle with a smile on her face and a NEGU (Never Ever Give Up) attitude.

In January of 2012, and after 6 rounds of grueling chemotherapy, it was determined that Darah would require a leg amputation to give her the best chance of survival. Darah was also determined to play competitive sports again and because of this determination, she opted for a rare and disfiguring amputation and leg-reversal surgery called a "rotationplasty". This surgical procedure would be far more functional than a full-leg amputation at the hip, allowing her to hopefully skate again. After a long 16 hour surgery at the Vancouver Children's Hospital, we were told that the large tumor was gone. But because of the tendency for Ewing sarcoma to return, especially in those with metastases at diagnosis, Darah continued on chemotherapy treatment.

Unfortunately, only four months later, she developed excruciating pain while still on treatment and a relapse was confirmed, this time in her L5 spine. This was not a good sign. Multiple regimens of non-standard treatments were attempted and in December 2012, Darah's scans looked fairly decent with only one very small lesion in her lungs remaining. However, the toxicity from so many rounds of various chemotherapy drugs began to negatively affect her liver. She made the choice to go off of treatment for a few months and try and find a vaccine treatment that would be less toxic, with hopefully a positive outcome. Unfortunately, due to the small size of her lesion, she did not have enough live tumor cells to qualify to receive a personalized FANG vaccine, so this treatment was not an option for us. We continued to educate ourselves through medical journals and communications with other Ewing families and doctors on the E-SARC forum, on what other potential treatments were available through clinical trials.

While continuing to search for treatment options, Darah was feeling well enough at this point that she started training with hopes of making it on Team Canada's Sitting Volleyball Paralympic Team. In May of 2013, with only 2 weeks remaining before the invitational Team Canada tryouts in Edmonton, AB, Darah relapsed for a fourth time, this time to her spine again, as well as her kidney, liver. lungs and pelvis. Her dreams of playing on the Paralympic Sitting Volleyball Team and her dreams of skating again were shattered. She knew that it was going to be a huge uphill battle, one that was going to be hard to win, but she pushed forward with a positive attitude. With no hockey and no volleyball, Darah spent many of these next days fishing from her wheelchair. Her competitiveness never wavered. Because of this, she received a special Manitoba Master Angler's Award for multiple fish species caught in Manitoba waters.

After two months of trying a fifth new chemotherapy regimen, it was determined that it was ineffective against her tumors. There was nothing more they could do for her in Winnipeg, and after failing to qualify for two clinical trials she wasn't ready to die without one last attempt of trying some of the newest molecular target drugs available to Ewing's patients. We packed up the car without warning and drove 26 hours straight from Manitoba to Dallas, TX to the MD Anderson Cancer Center, where we received immediate treatment due to her dire condition. While at MD Anderson, Darah wanted to ensure that samples of her blood were collected for research purposes, if not to help her, then to help others with this same horrid disease. After only one week of being on the new target therapy drugs, the tumors appeared to be shrinking according to the Oncologists at MD Anderson and we were sent home with a prescription. Over the next month, Darah began to experience liver and kidney failure and passed away peacefully on August 18, 2013 at the age of 14 years old.

Interestingly, Darah's autopsy revealed that all of her very large tumors were mostly necrotic or dead. We will never know the cause of her liver/kidney failure. Toxicity from so much chemotherapy? Continued infiltrative cancer? Or, did the latest target drug combination (pazopanib and sirolimus) have such a quick and profound positive effect on the destruction of her tumors that it caused a phenomenon called Tumor Lysis Syndrome?

What we do know is that we need to find this answer and the answers to many more questions about Ewing sarcoma. We need to find less toxic and more effective treatments. The Ewings Cancer Foundation of Canada can help find the answers which will help our children live the full life they are meant to live. We continue to send donations to ECFC in Darah's name. Afterall, Awareness = Funding = Research = Answers = Cure.

Even knowing her time was up on this earth, it was Darah's last selfless wish to have her tumors harvested and sent away to the Children's Oncology Group for research purposes to help find a cure for future Ewing patients.

If you look up the definition of a "Hero" in the dictionary, it is "AN INDIVIDUAL WHO POSSESSES GREAT STRENGTH AND COURAGE, WHOSE ACTIONS AND/OR EFFORTS IMPROVE THE LIVES OR CIRCUMSTANCES OF OTHERS WITHOUT THOUGHT OR NEED OF PERSONAL GAINS". My heart is full of hope and inspiration because each day I wake up to the thought of my dear daughter Darah and I think about what a true hero she is - her and so many more of our precious children. It is because of them that we continue to fight for a cure.

-Dana Hoffman (Always Darah's Mom)