I am not sure what I have been doing since my last blog post, I can’t believe it’s been a year since my last entry.

It’s Christmas time and I am still on my quest for Joy. I carry a deep seated sense of sadness during the Christmas season. Residual pain I guess from being a single parent of two precious sons and not having money to provide for their Christmas.

When Jason was diagnosed with cancer at the age of two, I was strongly urged to leave nursing school and be at his bedside. This left me with no income from employment or student loans. I had to ask for social assistance and we received gifts from the local Christmas charity program.

It was not the life I had imagined for my sons and myself. I was a single mom and had enrolled in nursing school to provide a better quality of life for my family.

There I was in the middle of the Christmas season, no money, and my youngest son’s life was in jeopardy as T-Cell Leukemia and the treatment was wreaking havoc on his little body. Yellow flannel pajamas, little bald head, and 12 days of cranial radiation. It was torture to watch both of my boys life change at the drop of four little words – your son has cancer.

My faith in God was mighty and I prayed constantly for an army of Angels to watch over Jason, Brandon and all the children I had met on the children’s cancer ward. I would push forward in faith.

Years later I would recant this story to a dear friend and planted a seed to encourage our parent run charity for kids with cancer – The Kids With Cancer Society, to provide financial support to families who needed a brighter Christmas. When the pediatric oncologists that are treating your child’s cancer advise both parents to be at their child’s side for extended periods of time, income supports to make ends meet are not always available. Families have monthly expenses to provide food on the table, a home, transportation, and basic aids to daily living. Cancer does not choose families who have benefits from work, extra savings or a steady flow of cash.

To this very day, The Kids with Cancer Society continues to help meet the needs of families in crisis at Christmas time. While my memories of our own sparse Christmas season bring tears to my eyes, my soul is rejoicing in knowing that other families might be experiencing a little bit of Joy at Christmas.

Whatever circumstances you are facing during Christmas, hold on to hope, and look for Joy in simple things. If you are in a position to help others in need, do so, and remember everything will be all right.

 

published by Sheila Ethier

Copyright 2017

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