A Mother’s Story

by Donna Alex

We had just arrived at our son, Ted’s, varsity soccer game. He played defense and forcibly defended the goal. During the game he had a minor collision with the opposition that dropped him to his knees, which was out of character for Ted as he was always one to “suck it up” and keep playing. He was in pain, serious pain, and his coach took him out of the game. I wanted to run over to the bench but knew that was strictly forbidden. He was holding his upper body strangely, and it looked like a dislocated shoulder. At the emergency room, we were informed that Ted had a tumor, which broke his upper arm. And so our journey began in September 2007. The next day we were at Yale New Haven Hospital meeting with a world-famous surgeon specializing in bone tumors. Ted had been complaining of pain in his upper left arm, deep in his tricept; a strange case of tendonitis we were told. Rest and anti-inflammatories would help for a while, but it would return, and the pain seemed to be worse at night. No one was thinking tumor.

We were told at Yale that Ted suffered a pathologic fracture of the mid-proximal humerus from a large tumor. The tumor was surgically removed and replaced with cadaver bone, and the diagnosis at the time was a benign, aggressive myofibroma. He spent the rest of his senior year recovering, regaining use of his arm, earning his private pilot’s license and getting accepted to Florida Institute of Technology as an Aviation Management/Flight student in the hope of becoming a professional pilot. No more sports, no more thoughts of the military, but we had dodged a huge bullet, and we were very grateful.

After Ted’s successful completion of freshman year in college, an x-ray at Yale revealed a shadow. Another surgery was performed, another biopsy taken. The final pathology results confirmed our worst fears, Osteosarcoma. My heart broke, I couldn’t breathe, I couldn’t speak. I could not imagine how I was going to tell my 19-year old son that he had bone cancer. He would have to endure intensive chemotherapy and undergo numerous, extensive surgeries that would leave him physically compromised. He would be forced to leave college and perhaps give up his life’s passion. From that moment on, he would never be the same.

Fear turned to panic and panic turned to prayer. I no longer slept; I spent all my time researching. I quickly learned that Osteosarcoma, a cancer of the bone most commonly occurring in teenagers, is a good example of a pediatric cancer where little progress has been achieved. Not only have cure rates not improved but also the chemotherapy drugs are exactly the same as those used two decades ago. We spent the rest of the summer between New York, New Haven, and Boston gathering differing opinions. The general consensus was to do limb-sparing surgery followed by intensive chemotherapy. On August 31, 2009, when Ted should have been starting his sophomore year of college, he underwent a 15-hr surgery for a full resection of his humerus and shoulder followed by his first bag of chemotherapy delivered through a double-lumen port placed in his chest with a main line in his heart. No college, no flying, no life.

Ted took a medical leave from college, but the US Department of Education would not accept a medical leave as a reason for Federal Student Loan Deferment. As a result, his student loans would become due and payable while he was in a hospital bed. They would give deferments to students who could not find work, but they would not give deferments to students who could not work because they were medically incapacitated. However, I was told that if my son died, he would not be responsible for repayment. As a result of this insane law, my son had to take online courses through his university from his hospital bed to keep his loans from coming due when he could not even swallow his own saliva.

Ted suffered terribly that year. He never complained and became a friend to all the little ones on the pediatric oncology wing. I witnessed Ted push through fear, agonizing pain, unrelenting illness, depression, and loneliness. I have never been more proud of him. Our brilliant oncologist took such great care of my son and guided us every step of the way. I am afraid to think where we would have been without him. Ted stayed in the hospital during the week and would come home on weekends. I watched my handsome, strong, vibrant son lose his hair, his body mass, his ability to eat but never his dignity. I saw the light leave his dark brown eyes. I prayed on my knees that God’s Will Be Done, and He responded to me in such a way that I knew He would take care of my boy regardless of the outcome. I walked by faith and not by sight.

A child with cancer at any age is unforgivable, but when your child is an older teen, it is especially cruel.  High school brings its unique pressures to a teen desperately trying to “fit in” when it is un-cool to be different. If that’s not enough, the daunting college process begins with a year-long of stress-related deadlines. Let’s not forget the horrible financial aid process. Right at the point in your son’s life when he is searching for his own identity and purpose, he is stricken with a disease that strips away everything; leaving no individual identifiers, not even an eyebrow.

A young child will cling to their mother when sick and wants to be loved. My 19-year-old would swear at me when I walked in the hospital room after working all day to keep insurance coming in and then driving an hour to bring him dinner. He was angry, and rightfully so, and had to take it out on someone. I watched him proudly as he responded politely to everyone at the hospital, after all that’s the way I raised him, but it was only “mom” who got the special “F” bomb. As a mother, you put on your armor and take the hits because you would take the damn cancer from your son if you physically could. You fight the fight of your life for his life. It’s the stuff moms are made of.