If I ever look like I enjoy the challenges put before me you don’t truly know the pain deep inside my soul.
My son, Jason Ethier is a survivor of childhood cancer. In 1987 at 2 years of age he was diagnosed with T-Cell Leukemia. To cure the cancer Jason received chemotherapy for 30 months and 2400 Gy rads of cranial radiation. In 1987 I was told that without the treatment Jason would die. So I signed informed consent to the protocol. I was a single mom and I didn’t want my son to die. What I didn’t know was the toxic protocol would also change my son’s ability to have a life comparable to his peers. I didn’t know it would be this hard to watch him overcome challenge after challenge. I didn’t know my other son would have his own challenges as I spent time with his brother. I didn’t know I would acquire depression and PTSD.
A few months ago Jason applied for support from our local government, today he received a letter saying benefits denied.
Jason is a young man and faces challenges with the late effects of cancer treatment. The radiation treatments have impacted his life in a major way as Jason has a brain injury that affects his memory, attention and learning. Living with a brain injury has made school work difficult and caused employment issues for Jason.
Challenges with memory are the hardest for Jason to deal with. Medical researchers have reported that children who received cranial radiation as part of their treatment are at risk of early onset dementia as early as 36 years of age. ¹
Jason also has other side effects from treatments, hormone replacement therapy and sterility. Jason is being monitored yearly for heart damage from the drug Adriamycin. This February his echocardiogram revealed a decline in ejection fraction from 60% to 45%. Jason is now being followed by a cardiologist. He is experiencing symptoms that are frightening to him. He has told me he feels “his heart stop” and at times it’s beating too fast. And he is afraid of dying.
My anguish is deep and I am one frustrated pediatric oncology mom. How can a group of scientists develop cures that interfere with a child’s normal growth and development and then leave the child and family to navigate community supports that are hard to access or not available?
Jason is not alone, there are many survivors like him who need support. Advances to the treatment of childhood cancer have made it possible for many children to be cured of their cancer. For approximately 2/3 of these survivors their cure came with a price. Surgery, radiation and chemotherapy treatments can interfere with a child’s normal growth and development and often leave the survivor to face lifelong medical and psychosocial challenges. Some of these side effects include heart, lung or kidney damage, fertility issues, and neurocognitive impairment.
Childhood cancer survivors not only have medical issues but also have poorer economic outcomes. Studies have shown that compared to their siblings childhood cancer survivors have higher rates of unemployment and if they do work their income is lower than that of their siblings. It is imperative that these survivors have opportunities to live to their full potential. Childhood cancer survivors who have late effects of treatment need advocates to help improve their quality of life.
If I ever look like I am enjoying this journey………..it’s all pretend. I know God hasn’t forgotten me and if I did not have my faith I truly do not know how I would have the courage to keep moving forward.
I pray for all children with cancer and their journeys. God bless and protect each and everyone. I pray for the parents who mourn.