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.

Tuesday, May 3, 2016

I am at home convalescing a torn tendon in my ankle. This morning as I look out the picture pane window in my bedroom I can see the marvels of nature as a Saskatoon bush in full bloom, stands still to its purpose. It is a small bush compared to the 40 year old trees that tower over it. And like the Saskatoon bush they too stand still according to their purpose.

The room is silent and I just keep staring out at the beauty before me. A feel a sense of peace that is somewhat foreign to me and I silently say the words “Be still and know that I am God.” (Psalm 46:10 NIV)

Ok, I will rest in this place of calm tranquility and let Gods mercy and love fill my spirit. I will breathe in the fresh air, deep and with intention, cleanse me heavenly father. Let me always look to you when the burdens of childhood cancer days press heavy on my mind. When my moods become low and I can see nothing but the tears in my eyes and forget that in you God, I have hope.

A Saskatoon bush in full bloom standing still and getting ready to produce its fruit according to its purpose, reminds me that I am a child of God and I must move forward in faith, hope and love. God has a plan for me, I shall live according to my purpose.

This past weekend a friend of mine passed from this world to be with God. She wasn’t just a casual friend, she was a pediatric oncology parent, a kindred spirit, a lady who knew what I know: that childhood cancer is a life long journey. But she also knew one extra thing that I haven’t had to experience, what it feels like to have cancer.

Since 1987, I have met many parents who were told “your child has cancer.” And unfortunately some of these parents were also diagnosed with cancer. The number is to great for me to recollect in this moment of grief but, if I had to make a case for cancer and a genetic component I would be convinced.

I can still remember the day my friends daughter was diagnosed with cancer. Jason was one month into his own treatment for T-Cell Leukemia when we met this new family. We walked the corridors of the hospital together as our children were hooked up to IV pumps that delivered chemotherapy for the cure. This new family came to the first Christmas party in 1988 and we became comrades in our children’s battle for survival.

Today, I cry tears for my dear friend who fought her own lengthy and fierce fight with cancer. When you are crying and not quite sure how to fully express some of the moments you shared with other parents it’s handy to go back to old journal entries. Here are two entries I made in my book “Count It All Joy.”

Two small entries in my book are just a tiny tribute to this incredible woman and her family. But, my pain is so layered and complicated that I have lost my words. So this will have to suffice.

Rest in peace, my friend and rejoice in the glory of God. You were a gift to all who knew you.

from Count It All Joy:

Monday, April 14th, 1997

Today I awake with pain in my heart. I want to scream! Instead I hug my puppy, T.J. I then spend 30 minutes on personal hygiene. I try to look good on the outside, hoping I will feel better on the inside.

As hard as I try to feed, clothe and entertain my children…despite the many kind people who have shared their prayers and gifts with us, there remains a pain within me that I cannot escape. I will look for beauty, romance and JOY today.

I have the pleasure of driving Ashley and Michael to school. Ashley is 12 years old and is fighting her second battle with leukemia. She was two years old when she was first diagnosed. Last summer, after camp, she wasn’t feeling well, and the doctors found that the abnormal while blood cells had invaded her bone marrow once again. Ashley is very quiet and brave as she faces the challenges put before her. The least I can do is to drive her and her brother Michael to school when her parents need help. The two of them have been a wonderful gift to me with their teasing and joking natures.

Tuesday, May 6th 1997

This morning I shaved my head. Why I am not sure, but afterwards I felt very pleased. Both with the new look I created and with the freedom I felt in being allowed to shave my head. Through the shaving, the trimming and the cleaning, it suddenly occurred to me that fear is what causes my physical pain. For a few brief minutes I felt freedom, happiness and Joy.

In the small bathroom of white and soft pastels, there was my body in the skin nature gave me, hair falling to the floor. I had control of the razor. “Shaving and Freedom!” I said to myself.

This is for you Jason, Ashley, Gloria and all of my friends who are bald. Shaving and Freedom! I thought, “This is what cancer and the treatment does to you. You become bald, cells in your body change or are destroyed, you have no control and fear robs you of happiness.”

Saturday, February 6th, 2016

Yesterday was another day of broken hearts. As I sit here at my computer I am not sure how to tell you this story.

Once a year my son Jason goes to the Pediatric Oncology Late Effects Clinic for follow-up. Yesterday was his appointment and as he is now 30 years old I don’t attend the clinic with him. After his appointment Jason phoned me and said “I have to have another heart ultrasound in a month, there’s some changes to my heart.” I want to scream but I gently ask if he was able to get the print out of the ultrasound like I had suggested. He indicated that he forgot.

If you have read any of my blog posts you will already know that Jason had T-Cell Leukemia when he was 2 years old and received 30 months of chemotherapy and cranial radiation. He has grown up with late effects of cancer treatment including a brain injury which affects his memory and learning, he is sterile from chemotherapy and requires hormone replacement therapy. Jason’s life has been extremely challenging and there are days when he says he wished he didn’t have cancer as a child.

After hearing the news from Jason, but not getting enough of the details I went in to fight or flight mode. I wanted to speak to a Pediatric Oncologist and get a better understanding of what “changes to my heart” meant. I called the clinic and was not able to reach anyone. I sent several emails and was informed someone will call me at the end of the day. I was reminded that the clinic was busy and kids were sick.

Lovely, I thought to myself. I am a Registered Nurse who used to work on Pediatric Oncology, I am aware there are other sick children. So I sucked up the hit to my churning gut, and waited somewhat patiently for the phone call. (I hate phone calls to this day for this very reason, back in the chemo days the phone was always ringing with news I was not ready for.)

At around 4:00 p.m. the phone rang, the person on the phone explained that Jason’s ejection fraction is usually 60% and this week it is 45% and given the fact that he had a previous 45% result it was determined he should see a cardiologist. There was a brief discussion of the possibility of the chemotherapy drug Adriamycin causing cardiomyopathy years after the treatment was given. Jason was a toddler when he received his life time dose of Adriamycin. We talked about the treatment for cardiac myopathy and the phone call ended. I did remind the person that I had PTSD and was concerned about this change of echocardiogram results.

I was instantly brought back in time to another day when Jason’s echocardiogram results were abnormal. It was February 14, 1997, and the Pediatric Oncologist told me Jason’s ultrasound results were very poor, that he was in congestive heart failure and he would need a heart transplant. Those are words I will never forget, as they became the reason for me to write my book “Count It All Joy.”

I haven’t quite processed yesterdays news of possible heart damage. I am not quite sure who’s heart is broken mine, or Jason’s. Like we had to do 19 years ago in the month of February, we have to wait for the cardiologist to evaluate Jason. At this time I will hang on to hope that the result was an anomaly and when they check his heart at the department of cardiology they will tell Jason, your heart is functioning normally. Just like they said all those years ago.

Here’s the story from “Count It All Joy” – the experience that prompted me to write my book. If you find both stories confusing, well then I have been successful in sharing the roller-coaster ride our family has been on.

Monday, February 9th, 1998

The weekend has passed. I am glad it is Monday morning. Monday is a regular business day, and the day goes by at a quicker pace when I have places to go and people to see.

The dreaded Valentine’s Day is looming. Oh, yech! I keep trying to turn the reminders of pain and loneliness to happy thoughts.

Last year on Valentine’s Day, Jason had four medical appointments. An ultrasound of the heart at the hospital, a trip to the cancer clinic for his yearly check-up, back to the hospital to see the plastic surgeon about his burn scars, then across the street to the pediatrician to discuss hormone replacement therapy.

Jason and I are quite used to visits to the doctor, so four appointments in one day did not seem unusual. Tap, tap, tap, down the long corridor we walked to the pediatric cardiology clinic.

I said, “You go ahead, Jason. This is just a quick picture of your heart. You know the routine. I’ll just sit out here and read a magazine.”

“O.K. Mom! I hope the printer is working this time and I can take a picture of my heart to school,” he replied.

Click, click, click, down the street we walk to the cancer clinic. Another familiar outing for the two of us; we have followed this path from the hospital to the cancer clinic many times in the past ten years. The routine, twice-a-year check-up at the cancer clinic has always been a nice time to see old friends and catch up on news. During those visits the doctors had never had any frightening news about Jason’s health, not since that very first consultation on October 10, 1987. However, on this visit, on Valentine’s Day, 1997, I was told my son was showing signs of heart damage.

Oh, please don’t tell me that! This is the day I should get cards, chocolates and flowers from an admirer. I don’t want news of more tests, more doctors’ appointments or more information on the late side-effects of childhood cancer treatment. I don’t want to live in fear of my son’s heart failing and him dying before I am ready to say goodbye.

Oh, great. Now what? Should we go home so I can cry my eyes out? Or should we go and see the plastic surgeon and pediatrician as scheduled?

No, I am not ready to go home and accept this news. I want to be with people like doctors and nurses—comrades who can appreciate my fears. We will go to the appointments, and I will tell the friendly people there about the news of heart damage.

Jason did see the cardiologist and the repeat ultrasound showed his heart functioning normally. It was determined the February 14th result was an anomaly.

This week, on Friday, February 13, 1998, the day before Valentine’s Day, Jason is scheduled for an ultrasound of the heart and a check-up at the Cross Cancer Clinic. I haven’t scheduled any further doctors’ appointments. I am hoping the news is good. Then we can go for a bite to eat and buy some flowers.

 

Copyright 2016 Sheila Ethier

Friday, January 15, 2016

This is my first entry for the year 2016. I have been wrapped in a blanket of fear, despair and hopelessness.

This winter has been a rough road of grief. Depression and PTSD compounded by a period of mourning for the passing of my dad. This morning for the first time in a long time I woke up and felt brave enough to go outside and shovel the driveway.

It was quiet in our little cul de sac, I carried no sadness and I just took in the sights and sounds of a cold winter day in Alberta. The sound of the shovel as it scraped across the pavement, a bird singing it’s morning song and the sight of rabbit foot prints in the fresh white layer of snow.
During the moving of the snow I had warm wonderful memories of dad and I shoveling the same paths just 2 years ago. I had no tears this morning only love and gratitude. Enough grace for the day.

When I came into the house I tucked myself into my little corner and opened my iPad to check FB. I had a message from a dear friend. The message went something like this: I have been thinking of you a lot lately and this morning as I read my Bible I read Genesis 1:2 where God said “Let there be light and it happened.” It brought tears to my eyes as I prayed God would bring light to you. I am hoping you have a God-light day.

So far it has been a wonderful God- light day. Thank you for thinking of me dear friend.

I hope the prayers I say for people who come across my path have impact in their life, like the message I received today.

 

Friday, December 11, 2015

Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. (Matthew 6:34 NIV)

Long ago when I was writing my book “Count It All Joy” somewhere in my mind I was hoping I would one day have a rags to riches story to share. Unfortunately that is not the case. As an independent publisher promoting and selling my book is not in my wheel house of skills. Also, my challenges with depression and PTSD has impacted my ability to secure steady gainful employment. I am not poor, at least I don’t think so, but I do have a hard time making ends meet each month.

It takes great effort on my part to stop comparing my life to that of others. There is no point in doing a comparison, some people just seem to have an easier life. My life is what it is and I have come to the conclusion my life will always be challenging.

I am currently in a deep period of mourning as I come to terms with my father’s passing. It is hard for me to accept that I can never hold his hand, give him a hug or see his beautiful smile. My father’s presence in my life was very dear to my heart. As I have said before he raised my two sons and as a result I have spent most of my life with dad nearby. I feel like a part of my being has disappeared.

My faith in God assures me that his soul has departed and he is in God’s heavenly kingdom. I saw the smile on his face as he gazed into another space or place and took his last breaths here on earth. It was a glorious smile that filled us with peace as we bore witness.

As I try to live in moment, forget about childhood cancer days and stop worrying about how I will pay my bills, when will I feel better, why am I always so tearful, God always finds a way to nudge me out of the cycle of worry. Sometimes it’s the snowflakes, the blue jays in my backyard, my little white dog Coco, or my sons smiles who bring me to the present and let me know that life is good and I do have just enough grace for the day.

 

Sunday, March 14, 1999

Tomorrow my book Count It All Joy goes to the press. The printing, binding and viewing process should take about 3 weeks. I am very pleased with the progress I have made in self-publishing my first book. I like to work on the project as it keeps my mind from meandering to the lonely, achy feelings I still experience. I seem to get stuck in the same cycle of thinking, especially in regard to Jason’s life.

Monday, March 15, 1999

My book is not going to the printing press today. The editors and I require two more days to complete the revisions. Hopefully everything will be in order by Wednesday. I have only one thought on my mind these days. Get the book published.

Sunday, April 4, 1999

Today is Easter Sunday. The book is finally at the printers and is being prepared for the press. This week I will go to the printing shop and do a color check of the book cover. All of this publishing knowledge came with research that I did on my own to make sure my story was published. Self-publishing my story seemed to be the route to take. It was always important for me to be sure that the Kids with Cancer Society would get a portion of the money earned from the sale of my book.

Memories of the past still haunt me. My mind carries thoughts of loneliness, and anxiety still cripples me with fear. Push forward, keep busy, and don’t look back. Today is a new day. I remind myself that my moods are more stable and peaceful. If I really concentrate on the good things in life, I know I will get through the day. As long as there are children around how can I be lonely?

Friday, April 30, 1999

I wake up this morning with tears ready to spill from the corners of my eyes. I get dressed and walk to the cafe bar. I am hoping that the busy atmosphere will distract me from facing a day with tears in my eyes. I push the feeling away.

My book is in the bookstores and people are reading my story. That is a good thing. I try to stay focused on the goals I have set for myself.

Sunday, May 2, 1999

Yesterday I was scheduled to sign books at a friend’s cappuccino bar. I was not able to stay and continue with the signing. The anxious, restless feeling emerged and I could not sit still. I had to get up and leave the cafe bar. The noise and the people were too much for me to absorb. I drove away from my friend’s place knowing that he would be disappointed. But I know my mood swings very well and I knew with the tingling in my face, neck and spine that I had better find another activity.

I automatically took myself to Debaji’s Fresh Market. I immediately felt comfortable in the familiar environment. Even though I am still unable to buy groceries I followed my routine of looking at the produce and baked goods. I selected bananas and bagels. Maybe one day I’ll step out of the routine and buy a shopping cart full of fresh produce, fish and pastries. But today I’ll just stick with my simple purchases and cheer my soul with a bouquet of fresh flowers from the market’s flower shop.

I spent the rest of the day running errands and went to bed early with a good book. I am very pleased with the fact that my mind lets me absorb the contents of the book without the restlessness I use to feel when I tried to read. Right now I am reading a big fat book written by an Irish author. Her style of writing is just right for me. She brings in lots of characters and her writing moves in and out of several story lines.

Thursday, May 6th, 1999

Every morning I need to make sure Jason has taken his medication. I have just recently bought a 7-day pill container, with each day of the week marked on a separate compartment. I thought this method would help us avoid the memory loss and resistance that Jason appears to have in regard to taking medication.

This morning I opened the Friday compartment containing pills that will help Jason to concentrate, to stay focused on school assignments and maintain a socially acceptable behavior. I looked at four little pills in the tiny little compartment and realized that the events of the day will be somewhat determined by the chemical properties contained in the pills.

If Jason doesn’t take them before school, the day will be a lot busier for the people around him. If he takes them he will be a great deal easier to talk to and his behaviors will be less impulsive and aggressive. I am aware of this by years of hard-earned experience. There are pages and pages of information available for me to read and learn about the human brain and how injury to the brain can cause changes in human behavior. I don’t like to read those books anymore. I just wake up in the morning and hope the day will be a good one.

Earlier this week Jason met with the neuropsychologist who is now a part of the pediatric oncology team. The purpose of the meeting was to discuss ways that the doctor would be able to help Jason face his challenges. Next week the doctor will visit the staff at his school and describe the impact that radiation and chemotherapy have on a young child’s brain. We now have a medical advocate that will help to ensure Jason’s educational experience is a good one.

Saturday, May 8, 1999

Survival, that’s really what my journey has been about. I made a choice to share my story so I could feed and clothe my children. I made a choice to recover so my soul would know the pleasures in life. Survival, I wake up every morning with a passion to make a better life for my sons and myself.

I must have written this in my journal before. Very basic words of what must be done, but very difficult goals to accomplish when your mind is weary and your heart feels broken.

Today is going to be a busy day. I have two book-signing sessions scheduled. This morning I will autograph books for the Mother’s Day run sponsored by the Running Room in St. Albert. After lunch I will enjoy a latte at the Second Cup and sign books for friends who want my signature added to their copy of Count It All Joy. It sounds like a fun day. I hope my mood doesn’t wreak havoc on my ability to have a good time.

I am going to go for my morning run and release any negative thoughts I might be feeling. As my feet touch the pavement I visualize the anger leaving the soles of my feet. I run with a purpose, to leave the pain behind me with each new step forward. I love my daily runs and marvel at my ability to run, instead of sleeping and resting with my quilt.

The last few weeks have been very busy for me as I promote my book. I do all the promotion, interviews, book signings and distribution. It takes a great deal of courage on my part to look at the person in front of me and say here’s my story, I hope you are inspired by my words.

Monday, May 17, 1999

Take me to the market. Please! What a glorious place Debaji’s market is for the soul. The sights, sounds tastes and smells are very uplifting. There is an eclectic mix of people sampling fresh fruit, gazing at the yummy pastries and smelling the fresh cut flowers. With the gentle buzz of activity throughout the market your soul knows it won’t be lonely if you hang around for a bit. I love to order a latte, sit on the high stool at the bar and drink in the delights of nature at its finest. Always, bring me to the market, please.

Thursday, May 27, 1999

So what have I learned in the last ten days? I have been told that I am a good writer and that my book is very compelling. People are amazed at all that I have been through. I am in awe of the praise I am receiving. I have never considered myself a writer. I am surprised when people refer to me as an author. Enough said of that.

I am still facing incredible challenges as a single mother. Even though I have said   I am emotionally and mentally exhausted I am still expected to supply the health and safety supports my sons require.

Give me something practical and tangible to work with, like money to pay for a caregiver that can assist Jason with his daily living needs. Someone to help him with his homework, help him with his nutrition and fitness skills, introduce him to the community and let him play in a manner that is safe for him and for those that are around him. If I hold out my hand and ask for help in raising a child who has long term side effects from a medical treatment that was necessary to save his life, who is going to help?

Thursday, June 3, 1999

We see what we want to see. We hear what we want to hear. This thought keeps popping up in my mind over the last few days. Kids with cancer, is a phrase that says it all. People don’t want to see pictures of the sick kids, nor do they want to hear the details of the disease. There’s just something about the title kids with cancer that can make one feel queasy and uncomfortable or sad and teary-eyed.

A special young boy who fought a year long battle with Leukemia passed away last night. One of my friends telephoned me and told me the news, just as Jason and I were leaving for the Cross Cancer Clinic for an appointment. I was expecting a call any day now but was still very upset to hear the news.

God called another one of his children home. The child will suffer no more. The child is in a better place. These are nice phrases to say to help us cope with loss. But I have seen the agony of parents holding their child and witnessing the horror of the last breath. Those pictures in my mind will be with me always.

After I heard the news of my young friend’s death, I told Jason I didn’t feel like going to the clinic for his appointment. He said Mom “I need to go.” So Jason and I went to the Cross Cancer clinic. Jason met with the neuropsychologist and I went to the quaint little gift shop to look for a sympathy card for the family. Usually the little shop cheers my soul with its cute little teddy bears, and charming gifts, but not today. Today I stood in the shop and felt the pain of childhood cancer on my shoulders.

For a few brief moments my thoughts took me back to the days when I was the mother of a two-year old son who had Leukemia. I started to cry. I knew this wasn’t going to be a good time to look at cute things. I quickly purchased a card and walked down the hall to the pediatric clinic. Let me see a colleague I know and we can offer each other some support.

Echoes of the past reverberate through my skin as I recall the voices and faces of the children who ran down the long corridor to get to the playroom that offered childhood muses. The parents always walked at a slower pace with heavy hearts and their mind a buzz with worry. What will the check-up reveal? Has the cancer returned? What’s the blood count? Do we go to the hospital for chemo? Will I walk out of here with a smile on my face? Try not to think about those things, smile at the receptionist and say hello, pick up the requisition for lab work and take your child for the weekly finger poke. Drop by drop the blood slides into the plastic container.

Jason’s voice nudges me out of the shadows of the past and I hear him say, “I’m finished mom, can we go to McDonalds on our way home.”

 

Entries from my book “Count It All Joy”

Monday, May 12th, 1997

I once heard that we read to know that we are not alone. I write to know that I am not alone.

In the age of computers and technology that changes faster than my boys change their socks, I suppose I could sit at a keyboard and type my story. I actually did sit at my son’s computer one day and attempt to enter a writing program. After 30 minutes of the little arrow moving all over the screen and not being able to “click on,” I gave up. Then I realized I never did like mice and decided that writing my story with pen and paper was more appealing.

Writing by hand, with ink, also seems a touch more romantic. I like scrolling my thoughts across a clean sheet of paper.

I am an incurable romantic. I look for romance every day and in every opportunity. Ahhh, it is soothing to wipe away a tear, to caress a furrowed brow, to smile at a stranger, to receive a hug. These loving and yet simple gestures are sure to bring Joy to my soul. It has been said many times that I am too sensitive and too emotional, and that I care too much. Why is that? Are the tears a symptom of my illness? Or was I always this sensitive? It has also been said that I should get a grip and snap out of it. Get back to reality. “What is reality?” I ask.

I wake up every day and ask, “When with healing come?”

Oh, if only major tragedies would stop occurring in my life. The emotional and physical trauma I have experienced have sharpened my senses. I have an increased awareness of human suffering. I know what pain is and what loss is. But because of these experiences, I also know what Joy is.

When the doctors informed me that Jason had leukemia, a part of me died. The agony of knowing Jason had cancer and fearing that would lose my baby was more than I thought I could bear. I cried almost every day. I was convinced I would never smile again or feel happiness. Life became very serious, and I avoided people who didn’t understand my pain. I was convinced Jason would die. My son had cancer, and I was a student nurse who knew what leukemia did to children.

Jason was diagnosed with T-cell leukemia on October 10, 1987, and it wasn’t until February 1988 that I caught myself smiling. I remember thinking, “How awful. How could I smile when my son was so ill?”

The pain is so intense, it is as if today is the day that they told me Jason had leukemia.

Where is the healing, the closure, if the wound remains open? Jason is still alive, but his cure came with a price. We still live every day knowing that cancer may strike again. We must also face the medical and emotional challenges that the treatment of T-cell leukemia brought to our family.

Deep within me there is a knowledge that if I accept the day as it is I will find some reason to smile. Maybe a tiny ray of sunshine will peek into my life and I will feel Joy.

I must accept that Jason will die one day. Death is a part of life. Until he takes his last breath, I will do everything I can to make him happy and to keep him safe. Today, I am still not ready to write about Jason’s battle for life.

Thursday, May 15th, 1997

Today I will look for Joy. I will take T.J. for a walk. I will work in the garden. I will talk to new people. I will not let fear, pain or loneliness creep its heaviness into my soul or let it lie upon my shoulders. I will drink a latte, look for flowers and gaze upon the beauty that surrounds me.

I tour the riverside of St. Albert, looking at all the familiar buildings, bridges and paths. Memories of long walks with my babies in a double stroller come flooding back. Oh what sweet, easy, promising days those were. We can never t=return to those days. Life was very different back then.

It is two years ago this weekend that I was hospitalized the second time for major depression. On Sunday, May 9, 1995, I took all the medication I had to stop the profound sadness, despair and pain. I was at my sister’s house for a few days to get some rest. I could not get settled and the tears would not stop. I no longer had the strength or desire to live.

I swallowed all my pills and laid my head on the pillow. I closed my eyes and waited for sleep to come. I was very tired but thought, “Maybe I should tell my sister.” It was one of the better thoughts I had. Because of the love of my sister and Dr. Silverstone’s belief in me, and by the grace of God, I am alive today. They would not give up on me and encouraged me to fight my illness. They believed that, given enough time and with the proper medical support, I would recover.

Friday, May 16th, 1997

I sit here in the local cafe bar with a heaviness in my heart, wondering where the Joy will be today. I say to myself, “What do I do? Where do I belong?”

My family is going camping. That leaves me alone with puppy, T.J. The ladies next to me are discussing sewing and iron-on patches. Normal living occurs all around me. I know that if I keep busy, keep connected with people, walk and garden, I will make it make it through to the next day. I will look for pink roses, bath T.J. and give him a hug.

 

copyright Sheila Ethier 2015

Sunday, February 1st, 1998

It is Sunday morning, 6:30 a.m. I am dressed and ready for the day. I am sitting in a café bar not too far from my house. I feel rather content but fiercely afraid someone will take away my Joy.

Yesterday was my last day as a registered nurse at the hospital that I have worked at since I graduated from nursing school. I did what I could to argue my point that terminating my position while I am mentally and emotionally exhausted is really not fair. No one seemed to listen I was told to see my psychiatrist and to work through my feelings.

On Friday I said to myself, “Just let it go, girl.” The situation is out of my control. I work very hard to keep my moods balanced, and my energy would be better spent on my sons and myself. When god closes a door, he opens a window. I am going to publish my story and tour with my book. I am dedicated to helping kids with cancer.

When I first arrived here at the café bar, I wanted to cry, take my sedation and go home to sleep for the day. Now that I see a new opportunity before me, I will face the day with a glad heart. I will wash my car, go to Hole’s greenhouses, go for a walk and spend time with my sons. If the tears flow, that will be O.K. They will stop and I will find something to smile about.

Monday, February 9th 1998

The weekend has passed. I am glad it is Monday morning. Monday is a regular business day, and the day goes by at a quicker pace when I have places to go and people to see.

The dreaded Valentine’s Day, Jason had four medical appointments. An ultrasound of the heart at the hospital, a trip to the cancer clinic for his yearly check-up, back to the hospital to see the plastic surgeon about his burn scars, then across the street to the pediatrician to discuss hormone replacement therapy.

Jason and I are quite used to visits to the doctor, so four appointments in one day did not seem unusual. Tap, tap, tap, down the long corridor we walked to the pediatric cardiology clinic.

I said, “You go ahead, Jason. This is just a quick picture of your heart. You know the routine. I’ll just sit out here and read a magazine.”

“O.K. Mom! I hope the printer is working this time and I can take a picture of my heart to school,” he replied.

Click, click, click, down the street we walk to the cancer clinic. Another familiar outing for the two of us; we have followed this path from the hospital to the cancer clinic many times in the past ten years. The routine, twice-a-year check-up at the cancer clinic has always been a nice time to see old friends and catch up on news. During those visits the doctors had never had any frightening news about Jason’s health, not since that very first consultation on October 10, 1987. However, on this visit, on Valentine’s Day, 1997, I was told my son was showing signs of heart damage.

Oh, please don’t tell me that! This is the day I should get cards, chocolates and flowers from an admirer. I don’t want news of more tests, more doctors’ appointments or more information on the late side-effects of childhood cancer treatment. I don’t want to live in fear of my son’s heart failing and him dying before I am ready to say goodbye.

Oh, great. Now what? Should we go home so I can cry my eyes out? Or should we go and see the plastic surgeon and pediatrician as scheduled?

No, I am not ready to go home and accept this news. I want to be with people like doctors and nurses—comrades who can appreciate my fears. We will go to the appointments, and I will tell the friendly people there about the news of heart damage.

This week, on Friday, February 13, 1998, the day before Valentine’s Day, Jason is scheduled for an ultrasound of the heart and a check-up at the Cross Cancer Clinic. I haven’t scheduled any further doctors’ appointments. I am hoping the news is good. Then we can go for a bite to eat and buy some flowers.

Tuesday, February 10th, 1998

When I go for my walk, my step definitely has more spring in it and my pace is quicker. I was an avid walker before the chemical imbalance took over my brain. I have truly missed those long, brisk walks.

Lately, though, I have not been overly interested in walking for pleasure or for exercise. Walk to where? When I get there, what will I do? Surely I’ll run into someone I know, we’ll chat for a bit and I’ll be too sad to walk home. My mood swings have interfered with the Joy I used to receive while walking the familiar, friendly paths of St. Albert.

This morning is somehow different. I feel the energy and excitement I used to feel when I walked. I have a destination, a purpose and a desire to complete the journey. As I walk, I think to myself, “I may have lost control of my mind but thank God I still have my legs. I can get up, get dressed and go for a walk. How lucky I am!”

The thought reminds me of a nice young man I cared for when he was hospitalized with a lung disease. He was 24, had schizophrenia and was confined to resting in bed because he had five chest tubes in his lungs. The plastic tubing is inserted through the ribs into the interstitial space of the lungs and held in place with a suture. My colleagues and I knew how horrifying one chest tube could be. We were devastated when this man required a fifth chest tube to maintain oxygenation for life.

I said to him, “How awful for you to have to stay in bed. I sure those chest tubes are very painful when you move.” “Yes, nurse, they hurt very much,” he said. “But, I thank the good Lord Jesus that I only need five.”

I looked at him as he lay in the bed raised to a 45-degree angle, three chest tubes protruding from his right side and two chest tubes from the left. I noted the tremors in his hands that were consistent with his illness and I thought, “What an optimistic reply!” I remember thanking God that day that I was able to walk off the ward and that I had a clear mind.

I have shaved my head again, much to the delight of Ashley, who is still bald, and to the dismay of my girlfriends, who think a woman needs hair to to be happy. I am going shopping to buy a new hat. Then I will walk to Cream and Sugar, my friend Natasha’s coffee and tea boutique. I love to visit there when I can.

Natasha’s home is very warm, friendly and comfortable. When I was a young girl of 13, I lived in the very same house that she now lives in. I like to look out of her back window and remember the days of laughter, games on the lawn and skating on the river with childhood best friends.

Oh, what simple, carefree days they were.

February 14th, 1998, Valentine’s Day

How do I feel? I feel I am on the brighter side of the path today. I took Jason to his two medical appointments yesterday. Jason’s heart is pumping efficiently. He will still require follow-up visits to the doctor to monitor the late effects of the chemotherapy and radiation he received as a baby. But, for now, I can relax. It has been one complete year since I received news of Jason’s broken heart. Today his heart is pumping efficiently, and he is happy and safe. I have a gift and I must count the Joy.

 

copyright Sheila Ethier 2015