Our Mom had a beautiful singing voice, but her greater talent was the strong belief in always doing the right thing consistently. Fairness, honesty and helping others were very important values that she instilled in her three daughters. She had a voice of empowerment for making things right.

This is the reason we would like to share our story...

Five years ago our Mom was diagnosed with lung cancer. She had half of her lung removed and underwent chemotherapy. The surgery was successful. We made sure we were with her for every chemotherapy treatment and she was so strong and so determined. Mom recovered and always scheduled her routine checkups.

Unfortunately, 2 years later, on the weekend of July 4th, 2009, Mom had her routine pet scan. Sadly, we were informed that it appeared that "her brain was bleeding." Once we arrived, they told us the news that you never want to hear. Our Mom had brain cancer. We exercised our grief by researching brain cancer and asking a million questions. We asked our Mother if she wanted to have this tumor removed. Once she said yes, everything from that point was all about speed. The surgeon felt if the tumor would become enlarged, she would run the risk of an increase in paralysis in different parts of her body. We immediately scheduled her surgery and they removed the tumor. The biopsy resulted in the finding of lung cancer cells, which meant the lung cancer had metastasized to her brain.

Her oncologist informed us that it was best to have some brain radiation treatments. We all became concerned and once again began asking a million questions. We repeatedly asked the doctors to explain the side effects of brain radiation.

We all kept notes. We were told the side effects would result in headaches, nausea, loss of appetite, fatigue and loss of hair. We asked her oncologist and her radiation oncologist the same questions over and over. The results did not appear to be permanently harmful. Our Mom started some treatments before she left the hospital and then she received her last treatments as an outpatient. Our Mom came home so strong from the hospital. The very moment she walked into her kitchen she started dancing, even with the loss of her hair she looked so beautiful! We have the video and a photo of this moment. She was so happy to be home.

After a few weeks, we scheduled her follow up visits. Unfortunately, slowly we started noticing our Mom’s speech becoming impaired. Her handwriting started to change, she started becoming confused. Walking and lifting her arms and bending her knees became difficult. Her muscle tone was decreasing. Eventually, our Mom became completely disabled and lost her ability to walk, speak and write. She required 24/7 care. Our beautiful, talented, independent and strong Mother became completely unable to care for herself. Our Mom was the strongest person we had ever known. She raised three girls completely alone, after surviving the loss of our father due to his tragic death. Now our Mother was completely bedridden and so helpless. How did this happen? We felt victimized all over again.

The unbearable devastation of witnessing our very strong Mother become so physically disabled was so painful and heart wrenching. We started asking questions and arranged meetings with her oncologist and her radiation oncologist.

During one of our visits with the radiation oncologist, we were told that prior to the doctors starting her brain radiation treatment, "there was controversy among the doctors." The doctors were trying to determine if our Mom should have whole brain radiation or spot brain radiation. The doctors decided to go with whole brain radiation.

This was never, ever discussed with us and we had no idea there were two different types of brain radiation treatments.

  • This was never an option for us to research. Her oncologist and radiation oncologist, as well as the hospital, absolutely neglected to inform us of this very important information before her treatments were administered.
  • This decision should have been made by our Mother with the help of her children after we all had the time to complete our research.
  • Why is it that we had absolutely no idea, that there was a choice being made by the doctors as to what type of radiation treatments they would administer?
  • We were never informed that there were different types of brain radiation treatments. This is the most crucial information we could share with everyone.
  • This was the decision that changed everything for our Mother without any of our acknowledgment.
  • The term ‘brain necrosis’ was never mentioned, especially considering the amount of note taking and questioning that went on between us and her doctors regarding radiation treatments. Although we were at the hospital every day and we were with her for every radiation treatment; the ultimate decision to perform whole brain radiation with the possibility of brain necrosis was never mentioned or discussed with our Mom or us. It is so hard to accept that we were all left out of this most important decision.
  • These options were life altering and moreover, life threatening. If we did not go back after she had completed all of her treatments and asked those questions, we would still have no idea that this took place.

Unfortunately, it was too late. The doctors made the decision to go with whole brain radiation, given our Mother’s age and health history. If we were informed about the possibilities of brain necrosis, we believe we would have made a different decision opting for the less risky spot brain radiation instead. But more importantly, our Mother would have had the opportunity to make this decision for herself.

Brain Necrosis is caused by a lack of blood and oxygen to the tissue causing the death of healthy cell tissues. In layman terms, her brain tissues suffocated, leaving our Mother completely disabled and bedridden. After surviving lung cancer and brain cancer, Mom now had to endure this condition because we were not properly presented with the treatment options. This should never happen to another family. This was pure negligence on the part of her oncologist, radiation oncologist and the hospital staff.

One can only educate themselves and further research information that is provided. When such important information is not provided to the patient and their families, the result is pure devastation.

Our Mom’s legacy was to love her family so deeply. Her children, grandchildren, great grandchild, family and friends, meant everything to our Mom. She managed the training education center at Verizon; she was the choir instructor at Saint Rocco's and was Tom Jones’ biggest fan.

We hope you share our story with your family and friends.

We wish you and yours the best of health,

Love & Enlightenment, Laura, Judy and Jolene