How exactly did Alexandra end up with a little leg?
By Diane Donchak, Alexandra's Mom:
In March 2002 as I was helping Alexandra put on her pajamas, I noticed that her right knee seemed larger than her left knee. She was only 6 years old at the time. Little did we realize the many hardships that lay before us and how our lives would never be the same again. We took Alexandra to her pediatrician, who thought the swelling might be the result of an infection. It was not. We eventually went to an orthopedic doctor, who almost immediately determined that it was a tumor and, most likely, a malignant one. We were in a state of shock and disbelief at this news. We had a biopsy performed at Memorial Sloan-Kettering Cancer Center (NYC) and, to the surprise of the surgeon, it proved to be benign. We were overwhelmed with a sense of relief. Alexandra underwent surgery to remove the tumor and lost a portion of her growth plate in the process. This meant that she would require further surgeries down the road to lengthen her leg. There was also a 40% chance that the tumor could recur at some point. Despite these possibilities, we were grateful that the tumor wasn't malignant. Alexandra's leg was in a cast during the summer of 2002, which was both awkward and uncomfortable in the summer heat. We looked forward to the removal of the cast and our planned trip on the Disney Cruise in October. The cast came off in August and Alexandra returned to school in September. Toward the end of September, we noticed some swelling in her leg again. Upon returning from the cruise, we went to see our surgeon for a follow-up visit and he confirmed that the tumor had grown back. Expecting this second tumor to also be benign, surgery to remove it was scheduled. Biopsy of the "frozen section" (a small sample of the tumor taken while the patient is still in the operating room) looked suspicious and the surgery was cancelled. We would have to wait until a full biopsy was completed before proceeding. A few nerve-wracking days later, we were told the tumor was benign. In November 2002, plans were made to remove the tumor again. However, this tumor was much larger than the original one and the surgery was more difficult because of the way it had grown in and around the nerves and blood vessels. It was deemed inoperable. Approximately one week after Alexandra's discharge from the hospital, we returned for a post-surgical follow-up visit. It was at this time that we were told that the surgical pathology report was positive for a maligancy; Alexandra had bone cancer. As if this news wasn't devastating enough, we were also told that her right leg would need to be amputated. Words can't describe the shock, pain and fear that we felt. A second opinion confirmed the malignancy and in December 2002, Alexandra had a broviac tube inserted and began chemotherapy. We went for second opinions regarding the necessity of amputation, something that we found very difficult to accept. The surgeons we spoke to all agreed that, if this was a malignant tumor, amputation would offer Alexandra the best chance of survival. Wherever we went, we brought her slides along with us for review. One pathologist determined that this was NOT a malignant tumor, and shortly thereafter, another pathologist agreed. We proceeded to get additional opinions from doctors in both the United States and Europe, which varied from one extreme to the other; from a very aggressive malignant tumor, to a benign tumor and just about everything in between. We did not know what to do at this point. If we continued the current treatment and the tumor was actually benign, she would lose her leg unneccessarily; if we stopped the treatment and the tumor was in fact malignant, she would die. The decision had to be ours, and we agonized over it for over a month, considering all the information and possible outcomes that had been placed before us. We finally decided that we could not take a chance with Alexandra's life and put our trust in the oncology team at MSK. On April 15, 2003, Alexandra had her right leg amputated above the knee. She was so brave. As she was waiting to go into the OR, she saw her father crying and turned to me and said, "Mommy, give Daddy a hug becasue he looks like he needs it." The surgical pathology report on Alexandra's right leg revealed more malignant cells than expected, so she was placed in a "high risk" category and additional chemo medications were added to her protocol. In the summer of 2003, a routine chest X-ray and subsequent Chect CT revealed some spots on Alexandra's lungs. We were terrified that the disease might have spread. The surgical team felt the spots might be some inflamation caused by the chemo or scars from previous infections and recommended that we wait a month before doing a biopsy. Thankfully, the spots disappeared. Alexandra had numerous hospital admissions during the course of her chemotherapy. One of the more memorable ones was on the night of August 14th, 2003 in the middle of the blackout that hit the northeastern portion of the country. We drove to the hospital in the total darkness. Upon arrival, the doctor determined that the cause of her fever was an infection caused by her broviac tube and that the tube needed to be removed. The OR was unavailable due to the blackout, so he would have to do the procedure at her bedside. Alexandra was nervous, but looked at the doctor and said to me, "He looks like someone I can trust." That said, they removed the broviac while nurses held flashlights around her bed. Alexandra finished her chemo at the end of 2003. She became focused on physical therapy and mastering the use of a prosthetic leg. In 2004, Alexandra accidentally hopped on a needle that lodged right into the middle of her left foot and had to be surgically removed, and in 2005, she had some suspicious moles removed from her leg and stomach. Since then, she's been in the clear! She's now studying at Johns Hopkins University, walking around on a Genium knee and talking about how much she wants to do a triathlon!