It has occurred to me that the entries for my blog should be in order. I like the order of things. But like my memories that come from an unordered place in my mind, my blog will include journal entries written at different points of time.

This morning I am questioning why, God has chosen me to share my deepest thoughts on Joy and sorrow. As I look out the window I see a cold blanket of snow, a blue sky with a light haze of white wispy clouds and small gentle snowflakes appear in front of my window. How can that be? There is blue sky and no heavy snow clouds, where are the snow flakes coming from? I take a deep breath and realize there’s so much I don’t know. But I do know that I need to share my story.

The following are journal entries from 1999.

Saturday, November 27, 1999 

I am at Debaji’s having my morning coffee and a muffin. I like to spend time here because I feel so comfortable and content.  The exotic flowers in the flower shop are displayed in a glass and wood framed walk in cooler that is located near the center of the market. The restaurant is right next to the flower shop and I like to sit near the windows of the cooler. It is easy to take a peek at the beautiful roses, lilies, and other exquisite blooms that are pleasing to the eye and the soul. No matter what my mood is, whenever I look at the flowers on display I am easily filled with Joy.

Christmas is approaching and the displays in the market are beginning to take on the festive look of red ribbons, green spruce and gold winged angels. The decorative poinsettias, little white snowmen and Santa’s with bright red jackets are carefully placed on wood shelves held in place by wrought iron castings. The entire market is rich with old-fashioned charm and I am blessed to have found this corner of the world.

Yesterday I gave a reading from my first book at a luncheon for a mental health workshop. I was very pleased to be invited to share pieces of my story with the audience. After I read passages from my book, several people were interested in having me sign their copy of the book. With each autograph came a brief story of the person’s experience with mental illness.

It was difficult for me to refrain from getting caught up in their stories and I could feel the energy being zapped from my body. I am confident that I handled the book signing professionally and pleasantly but, I was profoundly moved by the people who were there looking for answers or information on mental illness. Or perhaps, they were just looking for a friend, someone who knows the struggle, someone to share their thoughts with.

The reading and the book signing session took only an hour of my time, but years from my soul. Well, today I will take my friends advice and take time for me.  I will try to be selfish and not so thoughtful.

Sunday, November 28, 1999 

There are tears this morning. The moisture in my eyes is clouding up my vision and thick drops are spilling out and streaming down my face. I tried to stop them, to distract myself with music from the car radio but that lonely achy feeling refused to leave my soul. So I just let them flow and continued to drive.

As soon as I arrived at Debaji’s, I quickly went to look for a friend. As soon as I saw her I said “I can’t stop crying would you please pour me a cup of coffee and smile your lovely smile.”  She followed me to the cafe and poured the coffee into my favorite coffee mug. With a concerned look on her face, she asked, “What’s wrong?” As I dabbed tissue on my face to carefully dry the tears so they wouldn’t muss up my newly made-up face, I shrugged my shoulders and said “I don’t know, the tears just came and I want them to stop.” I was embarrassed at the tears and walked over to the table and sat down on the familiar wooden chair. I am going to look at fashion magazines, sip on my coffee and take my thoughts away from Christmas, loneliness and sad things.

Oh lord, are you sure you have the right girl? Is it me who’s supposed to know this pain and share news of Joy in spite of everything that I see? With a sigh in my heart, I sit at the table, open the magazine and let the day begin.

Wednesday, December 1, 1999

I still want everything around me calm and in some form of order. Too much noise and clutter distracts me. I don’t want to clarify this point. I just know that my soul is longing to be with God.

There are two ways to view the adversity that have taken place in my life. One is to believe there is no God. If there is a God how could he let little children be sick? The other view is to believe that there is a God and that illness and suffering come from life. Sometimes God performs miracles and healing occurs. Because a child dies even though we have prayed for healing, we must not assume that God is cruel. If every soul born belongs with our heavenly Father, then perfect healing would be to be in heaven with God.

There are mysteries of this world that I don’t have the answers to. But I do know that my soul is connected to God and all the goodness that comes from faith. My soul longs to be with the Lord. Until he calls me from this world, I lay all of my fears, worries and sadness at the feet of the cross. I look for the good things that can come from life.

copyright © 2014 Sheila Ethier

 

 

Since 1987 I have been involved with childhood cancer, as a mother, a nurse and a friend. I have met many children who faced enormous battles for life. I write about some of the children in my journal. The following are journal entries from the year 2000.

Thursday, August 24, 2000

I remember their faces. Their precious little faces with the chubby cheeks and vulnerable eyes that would look into my eyes and my soul was touched by their loss of childhood days. In the space of a few seconds when the words “your child has cancer” reach your ears, your heart drops to the floor and you cry out in anguish. Oh, not my baby. In that short span of time your life has changed forever.

Sunday, September 10, 2000 

Camp Beat It was last weekend. Lindsey couldn’t make it to camp this year. She was in the hospital. Her dad and her brother came to camp. But their visit was cut short. On Saturday night while her father was sitting around the campfire laughing and sharing jokes with the rest of the parents a police officer came to notify him that his daughter was quite ill. They gathered their belongings and woke up Kris to return to the hospital to be with Lindsey. Donna was already there. By Sunday Lindsey was in acute respiratory distress and was transferred to PICU. Lindsey had a liver transplant this spring. Two more doses of chemo to complete her treatment. This last round of chemo was brutal. Lindsey acquired a severe blood infection referred to as septic shock which in turn caused her kidneys to fail and her lungs to fill with fluid and the toxins from the infection.  As a result she went into respiratory distress.

Today I went to see her. She was lying in a bed that was next to the room Jason was in when he was in PICU after the fire trauma. It would have been easy not to go up to see her and have to relive other days that were spent sitting at Jason’s bedside. But Lindsey is the sweetest most precious young girl that I know and she deserved to have a visitor come by and wish her brighter days and little girl dreams.

At first I didn’t recognize her, she was bald, her face was swollen and she had sores on her forehead. Her eyes were closed and there were several tubes in her mouth, one for oxygen, one for feeds and the other I’m not sure. There were six intravenous pumps delivering meds through plastic tubing to sites on her delicate little girl hands.

My thoughts brought me to “Oh how cruel life can be for some”. Lindsey wouldn’t admit to life being unfair she would tell me, Sheila, yes it’s no fun being sick, there have been many bad days, but I have had some very good times.

Sunday, October 22, 2000

Lindsey continues to recover in the Hospital. She has been transferred to a regular ward and her lungs and kidneys are on the mend. The last time I saw her she just wanted to go home and have a nice long bubble bath. Oh girl I thought, why not ask for a nice long cruise to warm tropical islands and you can sip sweet cool drinks from tall frosted glasses and eat fresh juicy grapes.

Saturday, December 30, 2000

I met Makenzie and her mother Crystal at the hospital three weeks ago while I was working on a picture display project for Kids with Cancer. In the few minutes that it took me to take pictures of Makenzie, Crystal spoke of the challenges she was facing. She only had to say a few phrases like, I just moved here to get away from a bad relationship, my little girl has cancer and I don’t know how I am going to manage on my own. I stopped taking pictures, the project didn’t seem as important as offering support to Makenzie and her mother. Would you like me get some clothes and toys for Makenzie and her brother? Crystal said that would be very helpful, but what I really need is a washer and a dryer. As I gathered up my equipment I spoke to Crystal and said let me see what I can do to help you get settled in your home.

By making several phone calls I was able to connect Makenzie’s mother with some generous people in Edmonton who wanted to help make this family’s Christmas a bit brighter. In a short period of time Makenzie’s new home had a washer and dryer, a dresser, bunk beds, a sofa and loveseat, a Christmas tree, some toys, little dresses for little girls and warm comfy sleepers for babies. There was also a simple white wooden rocking chair. A chair for momma’s to rock their babies to sleep while whispering stories of love and happy times.

copyright © 2014 Sheila Ethier

 

The Face of Courage

Journal entry for November 21, 2007

The early morning breeze caresses my face as I pedal my bike on the familiar pavement that will take me to downtown St. Albert. The journey through the small city is pleasant as I cruise toward the main street.  Shop keepers are getting storefronts ready for a new day of business and I see someone putting up a sandwich board listing the daily specials for lunchtime goodies.  Further down the street at a café bar, tables and chairs are being set out for folks who want to sit outside and enjoy today’s sunny skies.  I hope my mood allows me to savor the pleasures of this day.

After parking my bike in front of one of my favorite café bars, I enter the busy little shop and the proprietor yells out, “Hey neighbor, how’s it going?”  I chuckle and reply “Great, how are you today?”  I like the routine of chatting with the gals while my latte is being prepared, there is always something to laugh about and the merriment is good for my soul.  With drink in hand I then chose a comfy chair, dig through my backpack for my day-timer, pen and stationary. In the charming little café I somehow manage to keep busy with my creative mind and lots of paper.  After the last sip of steamed milk and espresso I pack up my backpack, head out the door and prepare for the next journey on my bike.

As usual I had to force myself to leave my house and take care of a few errands that I have put off because I haven’t been feeling well lately. To look at me you would never know that I face daily challenges with depressive illness. I always hear comments like “you look so good”, “you must be feeling better.”  I generally have no reply and produce a quirky grin and scrunch up my eyes.  What answer are they looking for?

If I am out and about in the community and able to chat with a friend I might run into, or actually complete my list of errands, one could assume that I am feeling better.  That I am cured of this insipid illness of grey fuzzy days and profound sadness; I can now live a life with purpose and go back to work.  What you don’t know when you see me in the mall, or the café bar is that by lunchtime my mood will be very low and my desire to be with people or do anything for that matter will have vanished.

In the morning when I rise to the new day I can sometimes feel the rhythm of calm ordered thinking.  I have created a comfortable routine for myself where I go out in the morning while I have the energy and peace of mind to accomplish the small goals written in my day timer. Then as the morning passes fatigue and apathy engulf my spirit, and I know it’s time to make my way home.  Sometimes fear of how I will get home causes me to panic; I’m filled with fear and riding my bike or walking home are impossible journeys ~ so I call my father to come and pick me up.

The ride home is quick as I never venture too far from home.  My father backs the car into the driveway; I grab my belongings and make a quick dash to the house.  A sigh escapes my soul as I enter the small room at the back of the house; my safe haven.  The bedroom is cozy and quaint, filled with teddy bears, pictures of family, and little treasures that remind me of days gone by.  Here in this room life is simple and I can usually escape from the pain of the past or the bothersome thoughts of the future.

Thirteen years have passed since I have heard the words, “you have major depressive illness” and I still ask myself – Where did I go?  Where’s that young girl with all the energy and enthusiasm for life? I vaguely remember days of plenty of activity and lots of social contact.

I was the happy friend with lots of giggles, smiles and jokes.  Now I am reclusive and you rarely see me out and about in the late afternoon or evening. Friends and family have grown accustomed to my hibernation but, do not understand the tumultuous emotions that render me helpless and fill me with a sense of anxiousness and restlessness.

Many people know of my battle with depression and they also know of the numerous obstacles that have made my journey to health and happiness extremely bumpy.  People often say that I am a woman of great strength and courage.  I used to argue that statement over and over in my mind; doesn’t anyone see the tears in corners of my eyes?  Don’t you feel the perpetual anguish or hazy melancholy that wreaks havoc in my brain?  Don’t you know how difficult it is for me to leave my home?  Courage, there is no courage in this spirit; you’ve got the wrong lady.

And then one ordinary day while I’m out running my errands, I came across a print with the following inscription:

Courage doesn’t always roar, sometimes courage is the quiet voice at the end of the day saying –I will try again tomorrow.  (Mary Anne Radmacher)

I wrote the words in my little day timer so I wouldn’t forget them. When the day has been incredibly rough; when I think I can’t take one more minute of living with the darkness of depressive illness, I hang onto those words, say a silent prayer to God, close my eyes and wait for sleep to come.

Now when someone suggests that I am person with courage; I say “thank you for the kind words” and smile, indeed I know the face of courage.

copyright © 2014 Sheila Ethier

 

 

Excerpt from my Journal

 

January 8, 2011 

I have a deep personal relationship with God, but I don’t go to church on a regular basis. My faith is not based on my routine of going to church, it is based on what I feel deep in my soul. I was born and raised in the Roman Catholic faith and I do hang onto my religion. I have daily rituals where I light candles and say silent prayers for family or friends. Sometimes the prayers are for me, pleading for mercy and healing from depressive illness.

Recently I have felt that I should read passages from the Bible to help me learn God’s truth. So yesterday I bought a women’s devotional Bible. A nice compact one that I can carry in my purse or backpack. I made a promise to study God’s word from the oldest book in the world.

This morning I read the first verse from the book of Job and the daily devotional that was included in this Bible. As I read Job 1:21, I felt a conviction of purpose:

Naked I came from my mother’s womb and naked I will depart. The Lord gave and the Lord has taken away. May the name of the Lord be praised.

As a nurse, I have witnessed both birth and death. And it is true, we come into this world with nothing, we are naked and we depart with nothing and return to nakedness. You cannot bring anything with you. I was born with nothing and I will die with nothing everything in the middle is a gift. What then shall I do with this gift?

August 2011

How do you measure sadness? Where does sadness come from? Is this sadness real or true; or is my mind torturing me? Why does sadness keep picking on me? These thoughts touch me in a profound way. I am on this self-proclaimed journey of finding Joy in each day. For the most part I can see Joy in simple pleasures, especially if I am outdoors. The beauty in nature can take my breath away.

Today is a grim day. I feel sad, hopeless and overwhelmed by life. Why should I share this with you and bring you down to my sadness? Don’t you just want to run away from the pain and darkness and live in peace and light? Today I have no answers. No solutions to anyone’s problems. Ah, is that why I am sad? Because I can’t ease your suffering? Maybe so.

I have been tuned in to the suffering of others for as long as I can remember. When I was 4 years old we lived in a quaint house with a white picket fence and a bountiful garden in the back yard. There was a nice crop of corn.  In the fall harvest time my father went to pick the cobs of corn and it was there he discovered my secret. I was taking bowls of milk from the kitchen and leaving them in the corn patch for several cats. My parents could not figure out why all the bowls were missing and why we had so many cats in our yard. The fall harvest solved the mystery for my parents.

In terms of my altruistic nature and my career as a Registered Nurse, I have to say I feel more at home in a hospital than I do anywhere else in this world. Every time I walk into a hospital, I feel like I have come home. I love the look of hospital corridors, hospital rooms, and I love the busyness of getting on with life. Hospitals meet people at all stages of life; birth, sickness, health, and death. It’s a vulnerable scary place for most people, especially if you are a patient. And I do acknowledge that I would rather be a nurse, than a patient.

Currently I am working on a casual basis at our local hospital. My heart belongs to pediatrics but I can’t bring myself to work at the children’s hospital where Jason had his three year chemotherapy protocol. Too many reminders of his fight for life. For me at this time in my life helping moms and dads bring their new baby to this world brings me great satisfaction. The celebration of birth fills me with hope.

For the most part I can leave work with a smile on my face and know that I am helping families. The challenge for me is to find boundaries in helping people when I am not at work. If someone comes to me and asks for help, I will not refuse the request. I will brainstorm, right lists, call others to help and do all that I can to help someone in need. I believe in faith, hope and charity. If I have what you need I will give it to you. If I don’t have it, I will ask the universe to get help for you.

I know that I am not alone in my altruism, I have met some very generous people throughout my life. I find nurses to be gentle caring people and I think many nurses work after hours. The rate of caregiver burnout is high for people who help the sick and vulnerable. I have accepted that I will always have an altruistic spirit and as I get older I am trying to find a balance in helping others and taking care of me. If I am broken, how can I help you?

copyright © 2014 Sheila Ethier

 

I have come to know that depression is a biological disorder of the brain.  There are chemical messengers in the brain that regulate our moods. Scientists have identified norepinephrine, serotonin, and dopamine as three of the important chemicals that allow us to feel calm, happy and alert. There are various reasons why these chemicals may be out of balance.

In my case it is believed that chronic stress caused the chemical imbalance.  The chemicals were not able to enter the receptors, the brain’s neurons. Therefore my mood would drop to very low levels and I would cry excessively and felt desperate, hopeless and quite frankly very afraid.

The symptoms of depression are as follows: feeling worthless, helpless or hopeless, sleeping more or less than usual, eating more or less than usual, having difficulty concentrating or making decisions, loss of interest in taking part in activities, low energy level, decreased sex drive, avoiding other people, overwhelming feelings of sadness or grief, feeling unreasonably guilty, thoughts of death or suicide.

I remember as a student nurse that I had to complete a rotation on the psychiatric ward.  There were several women admitted for treatment of depression.  I remember thinking, why do you look so sad?  Why don’t you take part in the activities we are offering you?  Why don’t you fix yourself up with a little blush and lipstick and put some bright colored clothes on?  Shake those silly blue feelings away.  Stop feeling so sorry for yourself.

Because depression is an illness of the mind it is easy to say, I can’t see your ailment or I don’t feel what you’re feeling, therefore you can’t be sick. Unless you have experienced the mood changes of depression you can’t understand how debilitating the illness can be. Depression is a real illness that requires medical treatment.  Just like a diabetic requires insulin to keep blood glucose stable, a person with depression requires medication such as antidepressants to help regulate brain chemicals.

If you or someone you know face challenges with a mental illness and you feel like you can’t move forward, seek medical help. There are many resources available to help you through this illness. On my links page I share some Mental Health resources you can access.

Never give up hope.

copyright © 2014 Sheila Ethier

Today is a rough day for me. Childhood cancer memories wreak havoc on my mood. In medical terms it is called Post Traumatic Stress Disorder. I just call it profound sadness. I love this entry from my Journal in October of 2012.

Today, in this place where I am crying, God’s grace is sufficient for me. God Bless.

Tuesday, October 2, 2012

Cold and damp is the air as it makes contact with my face and I brace myself for the chilly bike. Last week the weather was warm and sunny and I ask myself why I didn’t ride my bike then in the gentle warm breezes. Then I reminded myself I am a survivor mom, I can handle a bike ride in the cold wet rain. As I pedal my bike toward my favorite path this message came to me:….”my grace is sufficient for you.” I kept riding in the rain reminding myself of God’s grace. It was a beautiful day for a bike ride.

When I got home I did a web search of my grace is sufficient for you.  I found this Bible quote:

But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. 2 Corinthians 12:9 (NIV)

Sunday, October 7, 2012

This weekend is the 25th anniversary of Jason’s diagnosis with T-Cell Leukemia. I am in the house afraid to leave. My father recently said to me you sure hang onto your house”. Which is indeed a true statement. My father who is 87 years old, has dementia and has recovered from a subdural hematoma has a busier social life than I do. My father enjoys his outings.

I am well aware of the fact that Jason will not relapse on Thanksgiving weekend, and why I have a fear of leaving the house makes no sense to me.

Of course last year Jason did end up in the hospital on Thanksgiving Day to have his gallbladder removed. And this summer I have been so busy taking care of my father I haven’t had the presence of mind to enter Jason’s May 23 – 26 medical mystery into my journal. I still have the story in my mind and all the lab work in my writing bag where I keep journals, chemo days protocol, and calendars from 1987 – 1990. There is a little story to tell about Jason and low neutrophils in the month of May this year but today is not the day to relive memories of spinal taps and low blood counts.

I want to relax and enjoy the sunshine. I have a candle lit for comfort and prayers. If the fear leaves me I will go for a bike ride. If not I will sit on the deck and catch some rays.

copyright © 2014 Sheila Ethier

Chemo Days

Thursday, October 8, 1987

This is where the story starts. The last night of carefree mother and son days. I didn’t know it at the time but in the morning my family’s life would change forever.

I was a single parent of two young sons, Brandon and Jason; and we had moved in with my parents so I could attend nursing school. I had just came home from a long day of studies at school and we were all sitting around the table having supper. Except for Jason he was lying on his chair, his face was bright red and he looked very ill. When I picked him up he was as limp as a rag doll. I was very concerned and drove him to the local hospital. When we arrived at the ER department I was relieved to see it was the same doctor who had seen Jason on the previous visits. 

Over the course of a month I had taken Jason to the hospital for what appeared to be a lump on the side of his neck. The first visit a throat swab was done for tonsillitis and he was put on a 10 day antibiotic treatment. The swab results came back positive for strep throat. About two weeks later on a Sunday morning he had enormous swollen glands on both sides of his neck and back we went to the ER dept. We saw the same doctor, he did another throat swab and another course of antibiotics was prescribed. The swollen glands seem to be getting smaller but the throat swab results indicated strep throat again.

A week later on a Sunday morning Jason did not appear to be getting better and still had enlarged glands on his neck. Back to the hospital we go and this time the doctor did some blood work along with a change of antibiotics. The doctor was suggesting that Jason might have mononucleosis as his white blood cell count was elevated to 12,000/uL. The next day I had received a phone call from my family doctor and she suggested the same thing. So Jason continued on with the antibiotics and I continued on with school.

Now we are back at the hospital and as I mentioned the same doctor was on call. Blood work was repeated and I sat in the waiting room of the ER department cradling Jason on my lap. The doctor came and sat beside me and with a strange look on his face he said, “the blood work is abnormal and I didn’t believe the results so I went to the lab myself to look at the sample under the microscope. The lab technician and myself recounted the results several times. Your son’s white blood cell count is 78,000/uL. I have called your family doctor and she has suggested that Jason have an injection of antibiotics right now and she wants to see Jason in her office first thing tomorrow morning.

Jason took the injection of antibiotics and I went home wondering why his white count was so high. With Brandon and Jason snuggled in bed beside me I was frantically searching my medical texts to see what would cause a high white blood cell count. The best I could come up with was scarlet fever. The literature indicated the white blood count could go as high as 45,000/uL. We had a lousy sleep that night as Jason’s breathing was so labored and noisy and he was moaning in his sleep. Why is his breathing so labored, does he need his tonsils out? How naive I was.

Friday, October 9, 1987

As soon as the doctors office was open I wrapped Jason in a blanket and drove to the clinic as quick as the law allowed. It was clear that Jason was worse and in the elevator ride on the way up to the office he started vomiting. I ran into the doctors office and the staff immediately escorted us to the staff lounge. The doctor was there and she asked the lab to come in and take blood work. The lab came to collect Jason’s blood and we waited in the staff lounge for the results. I recall thinking why are we in this room and not the regular exam room.

The lab work came back quickly. The same doctor who delivered both of my babies sat beside me and said “Jason’s white blood count is 96,000/uL. I have made a call to the U of A hospital and I spoke to a specialist in Pediatric Hematology Oncology, he wants you to bring Jason to the ER dept. at the U of A immediately. She gave me the name of the doctor and said “go right now, go straight there do not stop at home and don’t take time to call anyone.” I looked at her and said “what kind of blood infection do you think he has.” In a calm voice that held a bit of fear she said “Sheila, Jason doesn’t have a blood infection I think he has leukemia. Now hurry go to the hospital. Will you be ok to drive?”

I don’t recall my reaction, but I remember driving my car down the road that I travelled every day to go to nursing school. Jason lay on the seat beside me crying, “Mommy, Mommy,” over and over again. I could barely keep my hands on the steering wheel and my eyes on the road. I wanted to scream, to cry, to hit something. But I reminded myself, drive to the hospital, park your car and pray you’ll not collapse when you get there. I said a silent pray that I would run into someone I knew once I got there.

I parked my car and somehow made it to the front entrance of the ER dept. which also happened to be the same entrance I used for nursing school, as the school was just across the street. Just as I entered the door by coincidence or by grace I met my nursing school instructor Lori. In a state of panic I told her what was happening and she immediately offered support and comfort. She stayed with Jason in the ER dept. while I go to a pay phone to call my mom and give her the news. Lori also went across the street to school of nursing to let administrators know that I will be taking a leave of absence from school.

At around 3:00 in the afternoon Jason had a spinal tap and a bone marrow biopsy to help with his diagnosis. The spinal tap was taken to determine if his central nervous system (CNS) had been invaded with the leukemic white blood cells (WBC). If the CNS was involved the treatment would be more aggressive. The bone marrow tap was taken to help determine exactly which blood cells were cancerous.

The doctors were sure that he had leukemia they just didn’t know which kind. I was informed that there were 3 types of leukemia that Jason could have; they listed off these names, Acute Lymphoblastic Leukemia, Acute Myelogenous Leukemia and T-Cell Leukemia. The doctor informed me that the first one ALL,  had the best prognosis. Oh good something to hope for, I thought.

Jason is admitted to unit 4E2 and I really don’t recall if the spinal tap and bone marrow tap were done in the ER dept. or on the pediatric unit.

The treatment began before the definitive diagnosis. 

Today is Day 1 of the POG 8704 protocol.

Chemotherapy Vincristine, Cyclophosphamide and Prednisone

Jason’s white blood cell count is now over 150,000/uL. The doctors explain to me that his body is filled with cancerous white blood cells. The chemotherapy that is scheduled for today will immediately start to kill the cancer cells. As a result of the cell death Jason’s vital organs could be compromised so they will give him a rescue drug called Allopurinol to help his kidneys excrete the dead cancerous white blood cells. Jason also gets IV antibiotics as he has a fever and no healthy blood cells to fight the infection 

Family convinces me to go home to try get some sleep. The first and last night I left Jason alone in the hospital. If I couldn’t be there someone from my family would spend the night.

Saturday, October 10, 1987

Day 2

Chemotherapy – Adriamycin

I returned to the hospital after a restless night of sleep. I think I cried more than I slept. I was waiting for the pediatric oncologist on call to come and tell me what type of leukemia Jason had. Jason was in his hospital crib getting his chemotherapy when the doctor arrived. Jason was frightened and cried because he was in this huge metal crib that looked like what I can only describe as a cage. My father stayed with him while my sister went with me to this little dark room they called the “quiet room.” The pediatric oncologist came into the room with a box of kleenex.. At that moment I knew the news wasn’t good. I started to cry and said “he has the worst kind doesn’t he?” She said “yes, Jason has T-Cell Leukemia and he is very sick.” She proceeded to explain that T-Cell Leukemia had a very poor prognosis and that the treatment is new. They have just developed a protocol called POG 8704 and they would like to put Jason on this study.

The doctor then went into great detail about the treatment Jason would receive to kill the cancerous cells and explained the side effects of the chemotherapy. She impressed upon me the importance of signing consent to the protocol/study they wanted to place Jason on. It was explained that there was really no time to think it over and that Jason needed to receive chemotherapy immediately or he would die. The study was to investigate if one certain drug was necessary with the cocktail of other drugs they would be giving. Jason’s name would be entered in a randomized study and someone would randomly decide if Jason should be placed on Treatment I or Treatment II.

I told the doctor I wanted him on the protocol that would save his life. I had lots of questions about this roll of the dice plan they were describing. The doctor explained that if I chose not to give consent they would still treat Jason with a protocol that is used for T-Cell Leukemia. I remember asking the question – if Jason lived anywhere in the world would he get the same treatment. The doctor explained that because childhood cancers are so rare pediatric oncologists from North America work together on cures though a group called Pediatric Oncology Group. She then explained that a sample of Jason’s bone marrow had already been sent to POG in the United States and they were waiting for my signature on the consent for this study they wanted to place Jason on POG 8704. In a state of shock and tears I signed the 7 page consent form that described the chemotherapy agents and the long list of side effects. There was a brief mention of radiation but it didn’t describe side effects, just mentioned consent would be obtained at the Cross Cancer Institute.

Later today the pastor from the church I was attending came by to visit. We met in the same quiet room where the doctor had given me the news of Jason’s diagnosis. And the pastor comes to pray with me and offer me support. He said earlier in the day he had been praying for me and the Lord had pressed upon him the scripture verse James 1 vs 2 This is what he read aloud to me:

Count it all Joy when you fall into various trials. Knowing that the testing of your faith produces patience. But let patience have its perfect work, that you may be perfect and complete, lacking nothing” (James 1:2 NKJV).

I remember looking at him in disbelief and thinking to myself my son has cancer, he might die and you want me count the Joy? I felt that he and God had no idea what they were talking about. I refused to acknowledge the pastors words. I don’t remember what the pastor said after that or how long he stayed. I do remember that I did not offer a prayer to God. I said nothing to God. I was still in shock.

Sunday, October 11, 1987 

Day 3

Adjustment day. Day of rest. Thanksgiving dinner not much fun.

I begin the process of moving into the hospital. Jason was required to sleep in huge steel framed hospital issue crib and I would sleep on the fold out parents cot. Jason hated the crib and he cried every time I put the heavy metal side rails up. Most nights I would sleep with him in the parents cot and when he turned 3 they let him have a regular hospital bed. 

Monday, October 12, 1987

Day 4

Spinal tap – intrathecal chemotherapy – Methotrexate, Hydrocortisone, Cytosine Arabinoside (Ara-C)

Jason has his first spinal tap. A special long gauge needle is inserted in Jason’s spine to collect cerebrospinal fluid to determine if the cancer is in his central nervous system (CNS) and chemotherapy is injected into his spine as a prophylactic measure. Chemotherapy is anticancer agents that are delivered through the blood and do not cross the brain/blood barrier. As Jason’s white blood cell count is over 50,000/uL there is a risk of him developing cancer in his CNS. The spinal tap is done by the resident on call for the weekend Thanksgiving weekend. The resident would later become Jason’s pediatrician in 1990 when protocol finished.

Clearly in shock, not praying yet. Not able to acknowledge God at this time. If I prayed then that would mean this was really happening. Have begun bedside vigil. 

Tuesday, October 12, 1987

First experience with grand rounds of the pediatric oncology team.

The pediatric oncology nurses attached themselves to me in an effort to help me understand the protocol Jason was on. They wanted to teach me what they knew about T-Cell leukemia, the treatment, the side effects, hospital life and prognosis. I was a quick learner but not very interested in what I was learning. It would be the deepest most profound relationship of my life. Pediatric oncology nurses and I would bond like crazy glue on it’s prey.

Friday, October 16, 1987

Day 8

Chemotherapy – Vincristine Labs – CBC

 Broviac Central Line Catheter.

Chemotherapy is very toxic. Because Jason was only 2 years old and would be receiving chemotherapy for approximately 2-3 years the doctors suggested that Jason have a central line catheter inserted into his chest. This special intravenous catheter called a Broviac catheter allows the chemotherapy to be administered safely without damaging Jason’s skin or blood vessels. It will also be used for antibiotics, blood products and to draw blood work instead of poking Jason with a needle.

Jason goes to the O.R. and receives a general anesthetic to have the catheter inserted. The catheter is inserted into Jason’s neck and the tip of the catheter enters one of the main veins close to his heart, the other end of the catheter is tunneled under his skin and exits from an exit wound near his breast bone. When Jason comes back from the O.R. I am unable to look at the white plastic tube hanging from the right side of he chest.

Still in hospital.

Sunday, October 18, 1987

It was on this day that I argued and pleaded with God. I was cradling Jason in my arms rocking back in forth in the rocking chair on the ward that made little kids bald. I started to realize how serious T-Cell Leukemia was and I felt in my heart that Jason couldn’t be cured with chemotherapy alone. I was starting to acknowledge that we might need God for this and then I remembered the scripture verse the pastor had shared with me the previous Saturday.

I read the verse in the bible again. I started to cry and I said “There is no Joy in cancer, God. I have enough strength and courage. Hasn’t my faith been tested enough? Please, not now Lord, not when I am finally happy. I am the mother of two babies. I am in nursing school. You whispered to my soul, Lord, and said, ‘You will be a nurse’. I am doing a good job. How could you let this happen to my son? He has leukemia and I don’t want him to die. Please, not this in my life now”.

I rocked, I cried and I prayed the Our Father. Then I surrendered Jason’s life to God. I said, “Thy will be done. He is in your hands. I will accept whatever lies ahead. He is your son. If you want him Lord, you can have him. But I hope you let me mother him for awhile.”

copyright © 2014 Sheila Ethier

In selecting the appropriate title for this book I could choose “The Many Perils of Sheila Anne.”  As I continue on in my journey of finding Joy in all things there are some days when there is so much pain in my heart that I can’t feel the Joy. Life’s challenges continue to rock my fragile state of mind.

The title for this book came from a personal revelation.  On Friday, December 17, 1999, right in the middle of the Christmas season while I was deeply saddened by the number of children with cancer that have crossed my path I sighed and said to the morning air “there’s an angel in my pocket.”  There must be an angel close to my soul whispering words of encouragement so that I can continue helping children with cancer.  In spite of my battle with depression I still get caught up in their plight.

Angels are significant in my life and have been for quite some time. When Jason was receiving chemotherapy in 1987 I would pray for his protection while he was lying in the crib and the anti-cancer drugs were being infused into his blood stream.  I would call to God for an army of angels to guard his bed and protect him from further harm.  Today I say that same prayer for all the children.  I believe there is an army of angels protecting children with cancer.

On Saturday, September 17, 1994 I had an encounter with an angel.  I was sleeping and my soul encountered a presence that was very pleasing, all knowing, peaceful and calm.  My soul had a conversation with the presence.  I whispered, “Mary?”  The presence assured me that everything would be all right.  The presence kissed me.  “Jesus” I exclaimed.  The presence told me to pray and left me.  I began feeling a void as it left.  I received another message, Little House on the Prairie, Wednesday, nine and ten.

As I lay there in bed I wrestled with the idea that I was to get up and check the television listings.  I knew there would be a message for me but I was reluctant to acknowledge what had just happened.  My human mind tried to reject the idea that something spiritual had taken place. Eventually restlessness got the better of me and I went to check the television listings.  I nervously checked the columns in the weekly television guide for Wednesday, September 21, 1994 at 9:00 p.m. and 10:00 p.m.  This is what I saw listed for both time slots: Touched by an Angel (Season Premiere).

Oh, boy I thought, great.  Why me?  I’m not an expert at this sort of thing.  I have depression and I can’t stop crying.  How am I to interpret this event? What did Little House on the Prairie have to do with the message? Was it my clue to check the TV Guide? Why did I whisper the name Michael? What does God want me to do with this event?

In May of 1994 I had a mental breakdown from the chronic stress in my life. Four weeks later in June while my thoughts were filled with profound confusion and overwhelming despair I said a silent prayer; “God if you are real, reveal yourself to me.” Was this soulful encounter the answer to my prayer? I will say, Amen.

 

It has been many years since that experience and I believe the angel came to me as a sign of hope. Even in the darkest hours of depression I managed to visualize myself holding onto a tiny corner of the robe of Jesus. Faith is difficult to hang on to when you have depression. Because your mood is so low it’s impossible to believe in anything.  Depression is an all-consuming illness that has the mind spiraling inwards on a journey into a black hole. There are no thoughts of brighter tomorrows.  There is no feeling of optimism, serenity or peace.

I am writing a story about faith in God, angels and kids with cancer.  These are not easy subjects to write about.  I want my writing to be credible. I don’t want people to dismiss what I have to say.  Because I have a mental illness it would be very easy for someone to say, “Ah well, she believes in angels, she had a nervous breakdown you know, very sad the way the mind plays tricks on you.”

I have to speak to you directly from the heart. I share with you what I know from my own experiences. It’s not very scientific work.  There’s really nothing concrete to measure. For me it’s all rather vague and obscure assurances based on words from an ancient book they call the Bible.  How do you test the words revealed?

I believe it is called blind faith. Surrender to another power. Surrender to God.   A friend’s quote is “If you look at all the intricate details involved in the design of every little thing it is easier to believe in God than it is to not believe.”  Believing in God gives me peace.  My faith has been tested mightily over the past twelve years and I could have turned away from God many times. But my faith in God is what has helped me through the difficult times.

There is a story inside me waiting to be told.  I can feel the words on the edge of my soul, creeping out bit by bit longing to be released and shared with you.  The heaviness of my past lingers on my shoulders and I am not sure when days will be better spent.  I want to be free of past burdens. Unhurried free of worry any clutter. Faith, hope and love keep me moving forward.

(written in the spring of 1999)

Fast forward to today:

Tuesday, November 16, 2011

Today I am sitting in an Italian café in downtown St. Albert. The café is across the street from the old Grabbajabba location where I wrote the first pages of my book “Count It All Joy.” The Grabbajabba café is no longer open and I still like to walk through the main streets of St. Albert. Luckily for me there is this little Italian bistro called Stella Blu. The café is actually located on the old Bruin Inn site, which was the local pub for St. Albert for many years. The original hotel was called the St. Albert Hotel and was first built in 1885. After the hotel was destroyed by fire in 1928, a new hotel was built in 1929 and was aptly named The Bruin Inn. Growing up in St. Albert everyone knew the Bruin Inn. As a child I knew the café for chips and pop and when I turned 18 I was allowed to cross the threshold into the bar that literally had atmosphere of an old town saloon. I spent many a fun adventure in that old pub. Right now I believe I am sitting in the spot that was the parking lot. Let’s leave the old pub stories for now.

For me this spot holds a lot of memories and even as I sit here looking out the window I have a view of the street that I use to live on. The street is named St. Michael Street and the houses are long gone. In my mind I can still remember all the neighborhood kids coming to our yard to play childhood games. The laughter and the fun we had are memories I will treasure forever.

I nudge myself out of my longing for days gone by and remind myself why I came here today. I am here with a vision, a purpose and a plan. It is time for me to start writing again. For years now I have felt compelled to share some of the memories that continue to move me in a profound way. Each time I made an entry into my journal I would get lost in my thoughts and my mood would not allow me to go back to that time, the childhood cancer days. I would question why I needed to go back in time and tell myself to live in the present moment. Don’t look back, keep moving forward. No good can come out of reliving that painful time in my family’s life.

In September of this year I asked God for a sign that I was to write this story. I felt I needed a tap on the shoulder or a whisper to my soul – write the story Sheila. I waited, I prayed and I waited some more. Nothing and I felt confident the story was mine and mine alone.

Thanksgiving weekend the 24th anniversary of Jason’s diagnosis with T-Cell Leukemia was approaching and I marveled at my calm present moment moods. I had no painful memories, sad songs didn’t make me cry and for the most part I felt life was good.

On Sunday, October 9, 2011 the day my family was celebrating the Thanksgiving holiday had arrived. One of my good friends who understands the challenges of being an oncology mom called me that morning and asked how I was doing. I recall telling her I was having a good day and that I was not experiencing sadness or emotional pain. I told her I felt like it was a full circle moment for me in that I was not associating the thanksgiving holiday with Jason’s battle for life. It took me 24 years but I felt like I was sitting on top of the world. I was actually looking forward to the feast of turkey, stuffing and pumpkin pie and sharing good times with family.

Later that day while my family was giving thanks for all of our blessings I did not feel compelled to throw in “and thank you God for saving Jason’s life.” I left the family gathering early and went to bed early as I was scheduled to work the next day, Monday, October 10th. As I fell asleep I was nursing thoughts of working a 12 hour shift. Not long after I drifted to sleep Jason came to my room and asked for my help. He had been having bouts of abdominal pain the last few weeks and told me he was having another episode of severe pain. I sleepily told him to take an antacid, go home to bed and see a doctor soon. I went back to sleep.

At 3:30 in the morning I woke up for my usual bathroom trip and when I returned to bed I began planning my day at work. I tried to stop the planning and was trying to count sheep when the phone rang. I flew out of bed and heard a panic stricken voice. It was Jason’s wife and in a panic stricken voice, she said “Jason is here at the hospital, he’s in a lot of pain, the doctor did blood work and his liver enzymes are elevated. The doctor said he needs to have an ultrasound and Jason wants you to come to the hospital.” I don’t remember what I said. I just remember thinking, Oh my God; he has liver cancer from all the chemotherapy he received as a child. I reminded myself to calm down. I showered, called work to report off sick and I woke up my father to drive me to the hospital.

I arrived there around 4:10 a.m. and the first thing I saw was Jason lying on stretcher, groggy from no sleep and pain medication with his hands holding his stomach. My heart did a flip flop and I reminded myself to remain calm, now is not the time for hysteria. Within minutes the ER doctor came into the room and gave me his findings and then proceeded to tell us that Jason needed further blood work and required an ultrasound. He also added that because of the holiday the radiology department was closed so we would have to wait until later in the morning.

Whispers of the past were creeping into my mind as I listened to him. The past was becoming the present and I was remembering 24 years ago, when on October 9th the pediatric oncologist on call was telling me because of the thanksgiving holiday Jason would have to wait until Monday morning for his spinal tap. I shake my head and bring myself back to this moment. This moment where Jason is 26 years old, and he is married and his wife is at his side and the two of them are looking to me for answers. I don’t tell them of my fears of liver cancer. I just tell them “let’s just wait for the ultrasound.”

I try to relax, I sit and wait. I stand and pace the hallways. I make calls and I pace the hallways again. The hallways are familiar hospital hallways, paths that I walk as a mother and as a nurse.

Finally at 8:05 a.m. Jason is wheeled in a stretcher to the radiology department. In the dark little room that we were in the technician was collecting images of Jason’s stomach. Jason and I are used to the routine of ultrasounds to his heart as he goes for yearly echocardiograms to rule out cardiomyopathy. The images I was now seeing on the screen looked different somehow. There appeared to be numerous small marble like round shapes; tumors, I thought. The technician must have read my mind because she said “this is his gallbladder and those are gallstones.” Ah, I sighed, safe diagnosis, cholelithiasis. We can deal with this.

The ultrasound took about 30 minutes and Jason was rolled on back to the ER department. There was a shift change while we were in radiology so Jason had a new doctor. The new doctor came in the room and said he would like to call the surgeon on call to review Jason’s ultrasound results. He read the report to me and the results were “multiple gallstones”.

By 9:30 a.m. the surgeon was in to see Jason, asked him when he last had something to eat or drink and indicated he would like to take him to the OR within the hour to remove his gallbladder. The next minutes went by very quickly as consent for surgery was signed, stretcher moving fast down the hallway to the OR and OR staff obtaining information from Jason. I felt I needed to tell the anesthesiologist that Jason had a previous intubation when he burned himself in the fire mishap. I reported that the intubation was done as Jason’s airway was swelling with fluid and toxins from the burn and that the intubation had caused bleeding to his trachea and lungs. I then indicated that Jason was also on a ventilator for 2 weeks with Acute Respiratory Distress Syndrome. The anesthesiologist was very nice and said I will take very good care of him during his surgery.

Then the surgeon came by and I told him Jason was being monitored for cardiomyopathy from Adriamycin, one of the chemotherapy drugs Jason received when he was a child. I pointed out that on one echocardiogram Jason’s heart had an ejection fraction of 19%. He looked at me and said I will check his latest result on the computer, he added, this is a complicated case. I said nothing.

The surgery went on without a hitch and the patient is a month into recovery from his cholecystectomy. Jason had to take 4 weeks off from work to heal and the whole ordeal added extra stress to his already stressful life. How Jason deals with his challenges is truly remarkable and I am very proud of him. And it should be noted that I am also very proud of his brother Brandon. I do feel a measure of guilt writing this story about Jason and with hardly a mention of Brandon. It doesn’t seem fair and I need to express my love for both of them. It is equal love, no one is favored, and they are both wonderful sons. I will have to make a point of adding little anecdotes of Brandon and his funny thoughtful nature.

……….

I have taken a pause from writing. The writing and the reliving of painful memories is making me nervous. I packed up my pen and paper and took a 20 minute walk to another destination. All the while I am feeling nauseous and there is a vice hold of tension around my neck, shoulders and back.

I am sitting here at Chapters questioning why? Why do I have to write this story? Why do I feel compelled to share? Was Jason’s diagnosis with cholelithiasis on thanksgiving weekend the sign from God I had been praying for? Did God nudge me and say “This is your sign Sheila, you must write the story? I feel somewhat sure. If I don’t tell the story who will? Jason, Brandon, Nicole and my family don’t know the details like I do. The medical history, the recording of the chemotherapy, the cranial radiation and all the tests are neatly recorded in Jason’s chart at the Pediatric Oncology Late Effects Clinic. And I have long since learned that there is no shortage of specialists who come and go into Jason’s life, each with there own special expertise in cardiology, endocrinology, sterility, and oncology. But they do not know the story like I do.

Here I sit, still mystified by life and death, by Jason’s remarkable journey for survival and the enormous responsibility I feel on my shoulders. What is the purpose of this story God? Filled with confusion I get up from my chair and start pacing the rows of books on display. I stop at a shelf of Christmas books on display. Ah, Christmas, the season of peace on earth and a silent holy night. Maybe I should read a charming Christmas story. A beautifully bound hard cover book in burgundy with gold trim catches my eye. I pick it up and the title of the book is “A Classic Christmas”. I open the book and page 21 is the first page I see. This is what I read: The Angel Appears to Mary and the scripture verse Luke 1:26-38 is before me.  Here is the verse that I read:

In the sixth month angel Gabriel was sent by God to a town in Galilee called Nazareth, to a virgin engaged to a man whose name was Joseph, of the house of David. The virgins name was Mary. And he came to her and said, Greetings, favored one! The Lord is with you. But she was much perplexed by his words and pondered what sort of greeting this might be. The angel said to her, Do not be afraid, Mary, for you have found favor with God. And now, you will conceive in your womb and bear a son, and will name him Jesus. He will be great, and will be called the Son of the Most High and the Lord God will give to him the throne of his ancestor David. He will reign over the house of Jacob forever, and of his kingdom there will be no end. Mary said to the angel, how can this be, since I am a virgin? The angel said to her, The Holy Spirit will come upon you, and the power of the Most High will overshadow you; therefore the child to be born will be holy; he will be called Son of God. And now, your relative Elizabeth in her old age has also conceived a son, and this is the sixth month for her who was said to be barren. For nothing will be impossible with God. Then Mary said, here am I, the servant of the Lord; let it be with me according your word. Then the angel departed from her.

Luke 1:26-38 NRSV of the Bible

I read the verse and I am suddenly filled with peace. I stand in amazement that God is awesome. There are angels in my life. I surrender all to God and say, “Thy will be done”. I suddenly remember my encounter with the angel in 1994 and my mind goes back to that little hospital room and the little boy with the bald head and the yellow flannel pajamas. The tears, the agony of suffering, the fear of the unknown, and the prayers to angels to protect my son as the chemotherapy was flowing into his veins. “Cure the cancer chemotherapy, but please don’t destroy the child.”

The only words for this moment are: Faith, Love, Angels, Hope, Joy and Peace.

My God is an awesome God.

copyright © 2014 Sheila Ethier