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.

References:

  1. Gregory T. Armstrong, Petersen C. Ronald, Nan Zhang, Aimee Santucci, Deokumar Srivastava, Wilburn E. Reddick, Robert J. Ogg, Claudia M. Hillenbrand, Noah D. Sabin, Matthew J. Krasin, Larry Kun, Ching-Hon Pui, Melissa M. Hudson, Leslie L. Robison and Kevin R. Krull – Long-Term Memory Deficits and Early Onset Dementia in Aging Adult Survivors of Childhood Acute Lymphoblastic Leukemia Treated with Cranial Irradiation

I created this blog to have a voice. To stay current I have tried to write at least one entry a month. It has been 4 months since my last entry. I have lost my voice. I am encased in battle armor like an ancient warrior waiting for the next fight. The armor is keeping me safe. Protecting me from that deep seated soul pain I don’t want to experience.

I stay home, I stay silent. Finger to my lips, throat emitting an inaudible ssshhh sound. Don’t talk, don’t cry, don’t mourn.

This morning the armor cracked a little and I let the pain of childhood cancer days creep inside. I was minding my own business, watching “The Voice” on television. One by one the songs chipped away at my armor and I started to cry. The words,” like a movie, like a song” cut the deepest and I was lost in memories of childhood cancer. Little smiling faces. Each child’s face flashed before me. They were young, they were innocent, they were precious.

How do you not remember them? Perhaps you didn’t see them. I did all that I could to improve the quality of life of children with cancer and their families and in my efforts I became mentally and emotionally unhinged.

Look at me. Sitting here crying, in wonderment asking you how you don’t know my pain. There is an indescribable ache in my chest and it pulses in rhythm with my heart.

I have a story of my own family’s journey with childhood cancer. I was 30 years old when my 2 year old son was diagnosed with childhood cancer. My son is a 29 year survivor and faces challenges with the late effects of cancer treatment. He has a brain injury from radiation to his brain and this spring the late effects of Adriamycin on his heart was added to the mix of medical challenges.

I wake up every morning and “the movie, the song” is now the only life I know. There is a clear demarcation in my journey, there are two paths; life BC and life AC. I had a life before cancer and it was ordinary, it was fun, I had a happy heart and I lived free. My life after cancer has not been ordinary, my brain chemistry has changed, I have depression and PTSD, I live in sadness and fear and I do not live free.

I still see their faces, I remember my voice was loud and I fought for them. When I asked you to help children with cancer, did you? Did you look the other way because it’s too hard to look into their story?

I am changed and I have lost my voice.

In spite of my battle fatigue I will move forward in faith that God has a plan for me. I will strive to live in a spirit of hope, charity and love. It is my prayer that after cancer days are lived with purpose, and I hope my voice is heard.