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

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

In the summer of 1996 my son Jason was in a fire mishap. This is the story as I recalled it for my book Count It All Joy.

Wednesday, May 6th 1998

I will make today an “orange float” kind of day. The sun is warming the top of my head quite nicely as I walk about the garden, looking for little bundles of Joy. I see little black ants scooting across the soil, looking for today’s pickings. A big, fat, black beetle is crawling up the downspout of the eavestrough from the garage. As I bend over to dig out the weeds, I wonder where the beetle is going. “Is that a mommy beetle or a daddy beetle?” I say to myself.

This little corner of the world that my good friend lets me toil in has been such a blessing. I like to watch the changing colours of the season. Green brings forth renewal, rebirth and hope. The brown days are reminders that all life must end and sleep for a while.

The second time I was hospitalized for depression was in May 1995. A very kind nurse told me I should take up a hobby. I remember crying inconsolably, and saying, “I have no interest in anything. I don’t want to do crafts, read, join a group or play any games. Why don’t you see the pain I am in? Can’t you feel the sadness? Quit telling me to become a part of life. I just want to curl up into a ball and sleep for a very long time. I don’t want to feel anything anymore.”

They wouldn’t let me sleep, though. They told me I must prepare for discharge soon. Oh, great! Now I can take my sadness home and let my illness interfere with my sons’ quest for peace and happiness.

On a Friday morning, in the middle of a school day, Brandon and Jason rode to the hospital with their grandfather to pick me up and take me home. As I sat in the car with the boys sitting as close to me as possible and each of them holding my hand, all I could think of is, “Who is going to be the mother? How can I possibly accomplish the normal day-to-day care my sons require when I can’t stop crying?” I really did not want to go home that day and be the parent. I just wanted to be the little girl and have someone else make all the decisions.

The summer passed, and somehow we managed to get through the fall. A hobby! What activity should I become interested in that would help me occupy time? I am not able to take care of sick kids right now. I can’t be around too many people. Being alone with nothing to do only causes me more anxiety.

Maybe I should plant a garden. With that thought, I started to look at plants of all kinds, everywhere I went. I was collecting ideas.

Where will I get the plants? Where will I plant them? Should I plant from seed or go with garden-ready plants? Do they need lots of sun or will they thrive in the shade? My mind was becoming alive with new thoughts.

Thursday, May 7th, 1998

The thoughts about gardening would stay with me for one whole year before I was well enough to plant a small garden in the spring of 1996. I was somewhat reluctant to get started as I was sure all my plants would die. I needed to do something with my time besides sleep and worry. So I began working the soil and planted a few seeds at the end of May.

The hot days of June were spent at my sister’s home in Atlanta, Georgia. The boys and I were very busy visiting family and touring the southern states for the entire month.

Upon my return, I was thrilled to see my seeds had sprouted into tiny little plants. I took care of the small patch of earth with great pride, and a teeny bit of Joy spilled into my dark days. It wasn’t long before I felt I was ready to try my hand at planting perennials and herbs. I had the desire, but how was I going to shop for the plants? How much could I afford to buy? Where should I go to buy them? Thinking these thoughts would tire me for the whole day.

I made several attempts to shop at our local greenhouse. I remember getting dressed, driving there in my car and walking into the warm fragrant garden centre. I would begin my tour with smile on my face and a fierce determination to make a selection. Within minutes, though, I would feel the familiar spine-tingling, gut-wrenching fear. My mind would turn thoughts and ideas over and over as I walked up and down the aisle. I could not make a choice. I would go home empty-handed. Sometime I was so upset by the outing that I would have to take a long nap.

Friday, May 8th, 1998

Not to be a quitter so early in the game, I decided I would write a letter to the greenhouse staff and ask them to choose a few plants that liked to live in the shade. I described my illness to them in a wobbly handwritten script. A nice young gal tenderly chose some plants for me and called to let me know I could come to pick them up. I will never forget that day as long as I live.

I drove myself to the greenhouse and felt the bubbles of excitement as I looked at the bountiful supply of perennials that were chosen just for me. The plant expert carefully explained the type of plant and where to plant it, and gave me lots of tips on being a happy gardener.

By the time I left for home, my car was full of a lovely assortment of nature’s best and my mind was being challenged with new information. I wasn’t sure I was up to the job of planting and caring for these precious plants. I drove home slowly so none of my containers of Joy would spill over.

When I arrived home, I called for my mom to come and see the surprise I had in my car. She was in the backyard preparing a summer hot dog roast for our family. Mom came to the car and helped me bring the plants to the backyard. I don’t recall who was the happier of the two of us.

Yes, the happiness was too good to be true. Within minutes, the pleasure had evaporated, and pain and agony were once again a part of my life.

While we were busy with the plants, Jason had sneaked into the tool shed. He poured a small amount of gasoline from my father’s red container of lawnmower fuel into a small tin can. He walked over to the fire pit and poured the liquid on the flames. What happened next, no one really knows. My mom and I were in the front yard when we heard a piercing scream. We stopped in our tracks and looked up. We heard it again, this time louder. “Oh my God,” I shouted, “That’s Jason.” We both ran to the back yard. There he was, running around in circles and screaming.

I looked at him in horror. I did not know what to say or do. Jason had removed his burning shirt, and Norman, our neighbor, had jumped over the fence and was stomping on Jason’s shirt. Jason was screaming, “Mom, my life just flashed before my eyes. Oh, Mom, it hurts. Help, help.”

I was in shock. My mom was frantic and shouting, “What happened? Oh, my God. Help him.” By this time, Brandon and my father had come outside. Everyone was yelling and searching for answers. I ran into the house and grabbed my purse and shouted, “Let’s go. I’ll drive him to the hospital.”

Jason came into the house crying, and I took another look at him. Still, two years later, the terror I saw in his eyes remains etched in my mind. I realized this was a serious burn and I could not drive him to the hospital. I yelled, “Someone call 911.”

I don’t remember who made the call. Within minutes the ambulance and fire truck had arrived. Jason was in the front room, still crying, “It hurts, it hurts. Please put me to sleep.” The paramedics immediately went to him and tried to calm him down. They made a brief assessment, started an intravenous line and lifted him onto a stretcher. I asked if I could go with them and entered the back of the ambulance, sitting on the bench beside my son. The trip to the hospital was a blur.

When we arrived at emergency the doctor took the report from the paramedics, briefly examined Jason’s face and told me Jason would need to be intubated immediately. The doctor knew I was a registered nurse and spoke in the medical language I was very familiar with. He explained that the burn would cause Jason’s tissues to swell with fluid and that his airway would start to swell within minutes. So an artificial airway have to be inserted down his throat, and he would have to receive oxygen manually with a bagger. The only thought I had was to make sure Jason would not feel any more pain or trauma. My mind flashed backed to the days of leukemia, chemotherapy and needles to his hip and spine. I immediately requested that Jason receive morphine and sedation.

There was a blur of medical staff working around him. Within minutes, my little boy was asleep and the airway was put down the back of his throat. “Will I ever see his eyes open again?” I thought. My heart was breaking. I stood there in shock and watched Jason’s skin begin to fill with fluid. My family was there by this time and no one really know what to say, so we just waited.

It was determined that, because of the extent of Jason’s burns, he would have to be transported to the University Hospital’s Pediatric Intensive Care Unit. The pediatric transport team was called and arrived within an hour. The team was comprised of a specially trained PICU nurses, a respiratory therapist and a pediatrician. The doctor made his assessment of Jason and informed me that the next 48 hours were critical. Jason had significant burns to his torso, hands and face, and the body’s response to the trauma is to bring extra fluid to the site. In addition, the dead skin cells release toxins to the blood system. The extra fluid and toxins in the blood can potentially enter the lungs and cause respiratory distress. Added to this concern was the fear that the fire itself, with the gasoline and heat exposure to his mouth, trachea and lungs, had caused considerable trauma.

Jason was transported by ambulance to the hospital with the PICU team. This time I was not allowed to ride with my son. My friend drove me and we followed the ambulance to the hospital. I really don’t remember the thoughts I had at that time.

My family and I waited outside the intensive care unit while the specialists took care of my son. It seemed like forever before they let me in to see him. To enter the isolation room, we had to wear a gown and mask, and wash our hands. I had done this routine many times as the nurse. Now I was the mother. When I entered the room, Jason’s face, torso and hands were wrapped in dressings. He was hooked up to several monitors and a ventilator was supplying oxygen and artificial respirations to his lungs.

Oh, my gosh, this can’t be happening. I was once again in the hospital, at my son’s bedside praying for his life.

Jason spent two weeks in PICU in a medical induced coma and lying in bed on a ventilator. For two weeks, I couldn’t talk to him or look into his eyes. I was only able to sit in his room for 10 minutes at time. Rocking in the chair with my yellow isolation gown on, I would look at my son lying on the bed and the fear of him dying would bring tears to my eyes; I would have to leave the isolation room and return to the parent’s room. There was a cot there for parents to sleep at night, I spent most of the time lying on this cot. I was too sad to do anything else.

The pediatric intensivist was having a hard time extubating Jason from the ventilator. And this was a huge concern for me. This specialist told me he did not think Jason would survive. The pediatrician who came by to see Jason everyday told me Jason would live. I hung onto his words.

Finally the day came when Jason was weaned of the ventilator and was going to be transferred to the burn unit. When Jason woke up, he looked at me and the first words he said were, “Mom, I had a voice say Jason go back it’s not your time.” I was taken aback, not sure how to reply and the words that came from me were “Jason that was God.”

Those times spent at the hospital as the mother are days I don’t care to recall. Let’s just leave it at this: Jason, Brandon and I survived the experience.

 

copyright Sheila Ethier 2015

Do you have depression or some form of mental health challenges? Have you ever considered writing down your thoughts in the form of a journal? Read how I started journaling in 1997 and then go out a get your self a new pen, a nice journal and start writing.

You don’t have to share your journal with anyone. It’s your story, your writing, just for you. I truly hope your writing will help you in some small way.

Excerpt from Count It All Joy:

When I was first diagnosed with depression, I denied that I, a registered nurse with a good attitude and a positive outlook on life could be depressed. It took several months before I could see that the symptoms my body and mind were experiencing were those of depression. I accepted the illness then and worked with my psychiatrist toward recovery. That was the summer of 1994.

My recovery has been very slow, due in large part to the fact that I am a single mother of two sons, one of whom is chronically ill. During the past several years I have experienced some of the darkest hours I ever hope to encounter. The profound sadness, the loss of interest in living and the anxious, restless energy have been very frightening. Throughout my recovery, the tragic events in my life would continue, so the healing was very difficult.

In the spring of 1997, I decided it was time to write about my illness and my life’s experiences. I chose to write my story in the form of a journal. When I began, I knew that my story had to be told but I had no idea where to begin or how to get all my thoughts on paper. Initially, I hoped someone would write my story for me. I was incredibly ill and not overly excited about learning how to write a book.

One morning I selected a notebook and pen, went to the Grabbajabba in St. Albert and wrote my first entry. This was the beginning of a routine that allowed me many opportunities: to express myself on paper, to get out of the house, to meet new people and to chat about the simple pleasures of life. I still continue with my routine. I work toward being a better person, being a great mother to my sons and sharing my story.

Many of the entries in this journal come from the deepest corners of my heart and soul. Some were very painful to write. There are breaks between the dates of the entries, and some entries are very short. Some days, I had no energy or desire to write and could only sleep or do small errands or tasks that required little thinking.

Writing this journal has kept me focused and given me a sense of purpose. Writing about my illness has literally helped me to heal, to feel better about myself and to learn how to accept the challenges I continue to face. I carry the sadness that is in this book. Cry if you must, but please don’t carry the pain. Take what you have learned and be inspired to love more, care more and give more. 

If you or someone you know has depression and needs help, please contact your local Mental Health support agency. A family physician can also provide assistance in obtaining proper medical assistance. You don’t need to face the illness alone.

 

copyright Sheila Ethier 2014

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

 

 

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