Zachary began to complain of right shoulder and arm pain in July 2013, so I took him to a local health centre, where the medical staff directed us to an emergency room. X-rays were taken, which did not reveal any break or dislocation, but did show a space between two bones which was considered normal and due to growth.
Several weeks passed and Zachary continued to complain of persistent pain in his right shoulder and tingling in his arm and said that it felt as though 'his arm was dangling.'
I asked him to remove his shirt and saw that his right shoulder was lower than his left shoulder. I also felt a growth under Zachary's right arm which, was the circumference of a tennis ball.
This is when it first became apparent that something was wrong which could not solely be attributed to a growth spurt.
I took Zachary to his pediatrician and then to an orthopaedic surgeon who referred him for an MRI. We were then referred to an orthopaedic oncologist at Massachusetts General Hospital in Boston.
Zachary underwent a multitude of tests and procedures including a bone scan, CT scan, PET scan, biopsy of the scapula, biopsy of the bone marrow in his right and left lower hip and blood tests. In August 2013, Zachary was diagnosed with Ewing sarcoma in his right shoulder.
Zachary began chemotherapy around the week of August 26th, 2013. We had to travel to Bangor, Maine to undergo the treatment - a six-hour round trip from our home in Caribou.
For almost a year Zachary endured his chemotherapy treatment, VDC/IE, which made him seriously ill due to its toxicity. He also endured six weeks of proton radiation and surgery to remove the tumour from his scapula in Boston, where we stayed for 5 months. In August 2014, Zachary finished treatment and was considered to be in remission.
Around July 2015, Zachary underwent a routine chest X-ray and was diagnosed with a growth on his right lung. Despite strenuous treatment efforts previously, my son was diagnosed with a recurrence of Ewing sarcoma.
I was told by my son's oncologist that the recurrence would be difficult to treat.
Despite various chemotherapy treatments from August 2015 to July 2016, the tumours on Zachary's lungs continued to grow and attached to his diaphragm, oesophagus, and heart. We had reached a point where my son's cancer had become resistant to treatment. His condition quickly declined, and he earned his angel wings on October 22nd, 2016.
Zachary felt alienated and alone during his treatment and missed being able to just be a child and go to school with his peers. Being displaced from home during treatment was also very difficult.
Here in the United States, I have learned that approximately only 4% of the National Cancer Institute's budget is allocated towards pediatric cancer research and treatments. My son's cancer in particular has received the least amount of research, despite it being an aggressive form of childhood cancer. This needs to change if outcomes for patients like Zachary are going to improve.
Donate now (This link opens in a new window) More about Ewing sarcoma