About Stanley's Dream
Stanley's Dream was established in 2004 by Stan & Donna Edwards as a way to keep their son Stanley's legacy alive through the awarding of research grants for childhood brain cancer research, as well as providing annual college scholarships to graduating seniors in his name.
Stanley, or Stan, as everyone called him, was an academically gifted and devoted student whose lifelong dream was to attend Notre Dame University. He was also a promising athlete, excelling in basketball, football, and golf. Stan was diagnosed with a malignant brain tumor (an Anaplastic Astrocytoma on the left frontal lobe that involved the Thalamus) in March of 2000 at 12 years old while in the 7th grade. There were no obvious symptoms other than his poor academic performance at the start of his 7th grade school year.
After surgery to remove the tumor from his left frontal lobe, Stan developed paralysis in his right arm and leg, preventing him from ever again participating in the many sports he loved. He also developed learning disabilities due to the location of the tumor that affected him cognitively. However, he continued to focus on his education, determined to attend college one day, which he kept insisting would be Notre Dame University. His desire to attend Notre Dame
stemmed from seeing the movie "Rudy" a few years prior to his diagnosis. The movie was based on the true story of a young man who beat insurmountable odds to attend Notre Dame as well as play football for them. He loved the movie and watched it repeatedly after we purchased it for him.
You're gone but not forgotten, for we feel your presence here.
The memories long, our love so strong,
For the boy who shed no tears.
Your courage was remarkable, your Faith unwavering.
Your Wisdom so insightful, because you knew
what Death would bring.
The chance to be with God above, and enter Heaven's gate,
To show those behind what they must do,
Before it is too late.
You gave us Joy and Happiness when you were here with us,
You told us not to worry, just have Faith, not make a fuss.
We loved you so, we miss you so, you were our shining knight,
God loved you more and needed you, to show others what is right.
God strengthened you, he strengthened us,
We know we'll see you again,
But until that day, until we go, your legacy helps ease our pain.
Stan would continually ask his oncologist, Dr. Jean Belasco at The Children's Hospital of Philadelphia, if he would still be able to attend college when he graduated high school. He was well aware that his academic performance was not the same since the initial diagnosis and surgery. We all assured him that it would be possible and encouraged him to remain hopeful, but more importantly faithful.
Stan never complained once during his illness, nor asked "why me?" After his initial surgery and undergoing intense physical, occupational, and speech therapies, he was able to attend school during his entire 8th grade school year. During this time, he endured numerous trips back and forth to The Children's Hospital of Philadelphia for radiation followed by chemotherapy. He insisted that we schedule the treatment for late afternoons so that he could attend school each day. Cognitively, he regressed from the gifted student he once was, deeming it necessary for an individualized education program (IEP) to be established. He also developed Aphasia, a disorder that often occurs in stroke victims or those with brain injuries, affecting the language side of the brain, usually the left side as in Stan's case. Aphasia makes it difficult for a person to come up with specific words during conversation, causing them to speak in choppy or incomplete sentences, or use the wrong word all together. This made communication difficult for him. He knew what he wanted to say in his mind, but simply couldn't come up with the proper words. However, with speech therapy and the continual use of flash cards, as well as reading to him continuously, he persevered and showed remarkable improvement. Stan also received intense occupational therapy, but never regained the use of his right arm and hand. However, he learned to use his left hand with expediency.
In May of 2001, we received the unexpected news that Stan's brain tumor had returned. At the family meeting with Stan's oncologist to discuss the MRI findings, we were told that Stan had about 3 month's to live. We were told that his tumor had "imploded" into multiple tumors, and that barring a miracle; there was nothing else they could do. We were given the option of Stan participating in a clinical trial, one that many adults with Stan's type of brain tumor had participated in with promising results, but never before offered to a child. After discussing everything with Stan, he agreed to participate. He understood that the clinical trial was not curative, but possibly could prolong the tumors rapid growth.
Stan was determined to beat the odds and grim prognosis, instead relying on his faith that he would receive "the miracle", as we all were. The first clinical trial proved to be ineffective, resulting in Stan going on 2 additional clinical trials offered at The Children's Hospital of Philadelphia. The initial prognosis we received, giving Stan 3 month's to live proved incorrect. Based upon that prognosis, he should have been near death by August of 2001, but instead, he was able to begin his 9th grade school year through sheer
determination. He attended school everyday until mid October when his condition began to deteriorate. It was at this point that he lost his vision completely, also requiring the use of a wheelchair because of the growing tumors effect on his central nervous system. Stan's faith would grow even stronger, and when others marveled at his ability to remain so strong and confident in the face of such adversity, he would respond by saying, "God is with me".
Stan with his Dad
Stan passed away on Wednesday, January 9th, 2002 at 14 years of age. Through it all, Stan never lost his zest for life, his sense of humor, or quick wit. When his impaired speech and short-term memory loss prevented him from communicating clearly, he would laugh hysterically at himself when words came out wrong or didn't make sense to him. He couldn't remember the word for television remote and called it a clicker. He would dominate the "clicker" enjoying his favorite television show at the time, which was "Friends". Although he could no longer see, he would listen and laugh uncontrollably just as he did prior to his diagnosis. A few weeks before his passing, he became upset when "Friends" began airing repeat episodes each week. It was as if he knew that he would not be around for the May television sweeps to find out the outcome of Rachel and Ross. Stan was truly a special child and we miss him beyond words. He was a gift from God and taught us all a great deal during his 14 years. This is still evident by the many cards and letters we continue to receive from people telling us how Stan touched their lives by displaying such strength, courage, and profound faith throughout his ordeal.
According to The Children's Hospital of Philadelphia's Neuro-Oncology Researchers, central nervous system tumors (tumors of the brain and spine) make up about 20 percent of all childhood cancers; they are the second most common form of childhood cancer after leukemia. Brain tumors are the most common solid tumor in children. Approximately 2,000 children in the United States are diagnosed with a brain tumor each year. The most common forms of Brain Tumors are: Astrocytoma, medulloblastoma, and Ependymoma. There are about 700 children diagnosed with lo-grade Astrocytomas each year. In children, more than 80% of Astrocytomas are low-grade, and about 20% hi-grade (NCI). Stan was diagnosed with hi-grade Astrocytoma, which unfortunately is aggressive and difficult to treat.
We find these statistics overwhelming and alarming! It is our belief that more research must be done. Stanley's Dream was founded to assist in that endeavor by providing research grants to hospitals for childhood brain cancer research that focuses on new strategies for treating brain tumors that may hopefully uncover a cure, as well as providing college scholarships to graduating seniors. Although Stan wasn't able to fulfill his dream to one day attend college, Stanley's Dream can make that happen for others.