I'm shaving my head to raise money for childhood cancer research in honor of my cousin Nora Rogzony. Nora was an active 8 year old girl who started experiencing basic cold like symptoms. The normal sick doctor appointment, lead the Rozgony's on a six month journey that no family should have to endure.
I ask for you to supporting me as I shave my head in honor of my cousin, Nora! My goal is to raise $500. Thanks, Jack
NORA'S STORY
By: Jason Rozgony, Nora's Father
In June 2014, when we received Nora's complete diagnosis of NUT Midline Carcinoma, we knew that Nora had a very rare and aggressive cancer that has a very discouraging prognosis. Our hope was that with robust treatment, her youth, and strong fighting spirit, that she could be an exception to the norm. Although she has fought bravely through the biopsy, two rounds of chemotherapy, and two surgical tumor resections, the cancer continued to spread throughout her body.Our hopes then turned to a drug trial at the Dana Farber Cancer Institute in Boston where she was given a targeted therapy designed specifically for this very rare cancer type. The concept of the drug involved disrupting the cell reproduction process rather than traditional chemotherapies where more tissue is destroyed. The drug development is in the early trial stages, in fact, Nora was the only child that has ever taken it. Our obvious hope was that it was the silver bullet that we had been searching for. Unfortunately, the treatment was not effective in Nora's case, and at that point we learned that the tumors had spread throughout her abdomen, lymph nodes, and her brain.After talking to the doctors here and in Boston, we learned that further treatment options would only provide the possibility of slightly prolonging her life. Unfortunately, by treating the most dangerous tumor locations which are in her brain with radiation, we could in effect trade one problem for another by allowing the tumors in her abdomen to grow uncontrollably, which would ultimately cause more distressing complications. In comparison, allowing the tumors in her brain to develop in their own time will likely be an easier path for Nora.With this perspective, we made what we believe to be the heart-wrenching but compassionate decision to let her final weeks be filled with the joy of spending quality time with family and friends at home. We have asked so much of her during this journey that as parents we knew that we could not expect her to endure more treatment when the potential benefits were so small.Once we returned home from Boston, we transferred Nora's medical care to a local hospice center where we have doctors and nurses that come to the house and provide us with medicines to alleviate pain, nausea, and anxiety. They have also been very supportive by providing case management staff and a chaplain. Their goal is to keep Nora at home and comfortable as this dreadful process runs its course.Within a few weeks, Nora started showing many of the expected neurological symptoms. She has had difficulty walking, talking, seeing, and has had painful headaches. The symptoms have been progressing quickly and she is now confined to her bed and resting comfortably for the most part. She is very tired and moves little throughout the day. As parents, we are constantly at her side to talk to her, hold her hand, lay next to her, and let her know how brave she is and how much she is loved. We don't know how long this phase will last, but we are prepared to stay with her until the end of time.During these terrible hours, we are comforted knowing that Nora will soon be joyous in Heaven without pain, sickness, worry, or heartache. We know that God has been and is still with us, and although he has decided not to answer us with a cure, His plan is perfect and we will be reunited in His kingdom. This agonizing experience has exceeded our previous knowledge of suffering in ways that words can not describe. Through it all however, we have not drifted further from God, but closer to Him. We have also seen Him work for us through people in ways that only time will help us fully comprehend. Now is not the time to give up on prayer. We need them as much as we ever to see our family through this time and to rebuild our lives as we carry on without her. On Saturday, November 22, 2014, It is with the saddest of hearts that we must share that Nora gave up her fight today and has left us to be with our Heavenly Father. Her last days and weeks were quiet and peaceful as she let go of her struggle and entered the kingdom in which there is no suffering, only joy.Our hearts ache as we are freed from the disease that imprisoned our family for the last six months. We were at her side every step of this journey and were both at her side as she passed peacefully this morning.We are so grateful for the time we were given to parent such a kind, fun-loving, and energetic child. Blessed with incredibly caring family and friends, we were able to fit a lifetime of love into 8 ½ years. She will always proudly and lovingly remain in our hearts; however, we know her story is not over. We'll just have to wait a little longer until we get to read the next chapter."I have fought the good fight, I have finished the race, I have kept the faith." - 2 Timothy 4:7
Nora's full story can be viewed on CaringBridge.com
http://www.caringbridge.org/visit/norarozgony
http://kdvr.com/2014/11/02/500-people-walk-in-support-of-cancer-stricken-broomfield-girl/