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

Entry from my Journal.

August 25, 2014

For several days last week I kept repeating the words “His Eye is on the Sparrow.”

This morning when I opened the back door I saw a little white feather tucked under the door mat. I picked it up and wondered, is a feather from a sparrow? I brought the feather in the house and placed it by my candles.

Later in the morning on my bike ride I kept noticing little white feathers along the trail. Most were in the grass and not directly in front of me. I said coincidence, I am noticing feathers because of the words I received last week. I made a note to self, don’t pick up anymore feathers, unless it comes directly in front of you.

This afternoon while selecting a new plastic flower arrangement for my grandparents’ gravesite, I was picking up several colors and couldn’t decide if I should chose the pink roses or the fall leaf arrangements. While holding two little bouquet of roses, I reluctantly picked up one of the fall leave arrangements. In the plastic splendor of orange and yellow colors I saw something white. And there stuck to the price tag was a little white feather.

I purchased the pink roses and the fall leaves with the white feather. Coincidence or not, I knew what choice I had to make. I placed the plastic flower arrangement with the white feather on my grandparents’ grave.

I couldn’t get the words “his eye is on the sparrow” out of my thoughts. So I Googled the words and found them to be the name of a Gospel song written by Civilla Martin in 1905.

This is what my Google search revealed on Wikipedia:

The theme of the song is inspired by the words of Jesus in the Gospel of Matthew in the Bible: “Look at the birds of the air; they neither sow nor reap nor gather into barns, and yet your heavenly Father feeds them. Are you not of more value than they?” (Matthew 6:26) and “Are not two sparrows sold for a farthing? And one of them shall not fall on the ground without your Father. But the very hairs of your head are all numbered. Fear ye not therefore, ye are of more value than many sparrows” (Matthew 10:29–31).

(Luke) Are not five sparrows sold for two farthings, and not one of them is forgotten before God? But even the very hairs of your head are all numbered. Fear not therefore: you are of more value than many sparrows.

Civilla Martin, who wrote the lyrics, said this about her inspiration to write the song based in the scriptures outlined above,

Early in the spring of 1905, my husband and I were sojourning in Elmira, New York. We contracted a deep friendship for a couple by the name of Mr. and Mrs. Doolittle—true saints of God. Mrs. Doolittle had been bedridden for nigh twenty years. Her husband was an incurable cripple who had to propel himself to and from his business in a wheel chair. Despite their afflictions, they lived happy Christian lives, bringing inspiration and comfort to all who knew them. One day while we were visiting with the Doolittle’s, my husband commented on their bright hopefulness and asked them for the secret of it. Mrs. Doolittle’s reply was simple: “His eye is on the sparrow, and I know He watches me.” The beauty of this simple expression of boundless faith gripped the hearts and fired the imagination of Dr. Martin and me. The hymn “His Eye Is on the Sparrow” was the outcome of that experience.

—Civilla Martin

 

I am not sure why I had the words “his eye is on the sparrow” on my mind for all those days, I don’t recall singing that hymn. But I am glad the words prompted me to look online and find this lovely story. Reading the story of Civilla Martin gave me some comfort and I truly believe the Lord works in mysterious ways.

 

copyright Sheila Ethier 2015

Tuesday, May 5, 2015

It is finished. My father’s life on earth is complete and I miss him more than words can describe. And yet somehow the sadness surrounding me feels like a natural response to death. It’s a different sadness than the one I have come to know.

My father’s passing has touched me deeply and I want him here next to me. But, if I look back on my father’s 90 full years of living and loving; I am confident his purpose on this earth was fulfilled. My father’s death at a ripe old age is a desired outcome, when it comes to dying. Death at a ripe old age is somehow what we hope for, what we expect.

What is not expected is childhood cancer. It disrupts the seasons of life; you are born, you live with your family, go to school, get married, have children, grow old, play with your own grandchildren and then God calls you home. Childhood cancer disrupts that order and a smart mamma like me knows it and my heart aches for the seasons of life my sons’ should have had.

I have a lingering sadness that has stayed with me every day since October 10, 1987, the day Jason was diagnosed with T-Cell Leukemia.

The sadness is what I am used to and throughout the day I try to live in the present moment. I do smile and I can find little pieces of Joy. I  push forward in my silent suffering, day by day, with hope, faith and much love in my heart. But, it’s mostly sadness that I carry in my heart and soul. It haunts my dreams with scenes of Jason dying, or relapsing to T-Cell Leukemia, it creeps into my days with flashbacks of the chemo and radiation days, or the fire burning the tissues of my sons face, chest and abdomen.

I have been told my symptoms are Post Traumatic Stress Disorder. Diagnosis is good for labelling things, but the pain remains the same. No matter how many psychologists, psychiatrists, treatments or medications I grab on to for help, every morning I wake up with a deep pain in my heart. Other people’s advice or opinions do not change what I have felt and seen as a mother. I am 57, just one month shy of 58 years old and I tell you with certainty childhood cancer disrupted the seasons of my life.

copyright Sheila Ethier 2015

 

I have a new Angel for my pocket. My dad. On April 6, 2015 God called my father home.

The story below describes my encounter with an Angel in September, 1994. After the encounter I remember, waking my dad and I telling him what happened. He gave me a huge smile and told me that was a message from God. Dad didn’t ask any questions or express any doubt, he just believed. And now, that’s he’s in heaven I know he’s with me, over my shoulder cheering me on, just like the Angel did in 1994. Love you dad and miss you.

This is an excerpt from my Journal, the entry was written in the spring of 1999.

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?

It has been five 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.  It’s all just 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.

copyright Sheila Ethier 2015

 

Tuesday, February 24, 2015

It happens without deliberate thought and it happens every time I dry my hair. I wash my hair every morning and to style my hair I use a blow dryer. I start with my bangs and as the hair dries I turn the side mirrors on the wall cabinet. With a turn of my head to the left I am immediately transported back to the parent’s bathroom on the unit in the hospital where Jason was getting chemo.

It’s not a painful memory just a quick flash of times spent grooming in the tiny bathroom parents were allowed to use for the morning shower to wash off stains of the past 24 hours. A few minutes of quiet time to reflect on the horror of watching children fight cancer; a time to gather thoughts to prepare for morning rounds and the day ahead.

Every parent knew the routine. Pediatric Oncology rounds would happen in the morning and we all wanted our moment with the doctors who we now revered as the healers of our fatally ill children. We always had questions, looking for the words cured and no more treatment required. Our questions were answered but the chemotherapy continued.

The hospital days of chemotherapy are with me every day. I don’t let the memories ruin my day. I try to focus on the present moment and keep pushing forward with errands, the routine of things.

Tuesday, March 3, 2015

For many years my mantra has been occupy time with the routine of things. And now I find myself saying, it’s for promises made.

My reasons for moving forward are for promises I made to my father, that I would take care of him as he ages. Dad spent many a day at the hospital or the Cross Cancer Clinic with Jason so I could continue on with my nursing school studies.

My father was close to the age I am now, and probably had other things he would rather do with his time than sit with his grandson at the hospital. Dad would take Jason to many of the appointments and it didn’t take long for the nurses, doctors and other hospital personnel to recognize the grandpa who was very close with both of his grandsons.

Dad was so well known at the Cross Cancer Institute one of the nurses who was involved with the Alberta Association of Registered Nurses asked if my dad would be part of their public awareness campaign on Nurses and Families.

I still have the poster the AARN used for the campaign with a picture of my dad, my son’s and me tucked away somewhere in my possessions. Today it’s hard to write about the chemo days and the role my father played in my sons’ lives. He is sitting beside me as I write this, snoozing in his rocking chair. I look over at him and feel nothing but pride and a deep sense of love.

I will watch over you dad. It’s for promises made.

Monday, April 6, 2015

Today my dad passed away. My heart is broken. Not able to process his passing yet. In shock and denial.

copyright Sheila Ethier 2015

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It’s the weight of things that press hard on my heart and soul.

The last book I read from cover to back was “Still Alice.” That was in June of 2012 and two months later my dad was diagnosed with dementia. The book Lisa Genova wrote about early onset Alzheimer’s was my mini prep for the next phase of my life.

Now the book is out on the big screen and I cannot bring myself to watch it. I am living the challenges of dementia as a daughter caring for her father. For two years I have watched my father decline to the executive functioning of a child. And all the while step by step, loss by loss, I know in the deepest corners of my soul that this will be my son Jason’s life in the future.

I have done my research on aging and the brain and on cranial radiation brain trauma. Jason began his toddler years with cognitive impairment from radiation treatments, it only follows that his brain is aging at a more rapid rate than his peers. Pediatric Oncologists are following adult survivors who have received radiation treatments to study the late effect of radiation treatments. The literature coming out is referred to – Cranial Radiation and Early Onset Dementia for Childhood Cancer Survivors.

I have recently seen a  brief preview of “Still Alice” and Julianne Moore  is trying to tell her onscreen husband  that it’s like a part of her brain is dying.

More often than not my son Jason is telling me his memory is getting worse. He has expressed fears that he won’t know me one day. And last week he asked “me who is going to take care of me when I can’t remember how to?”

It’s the weight of things that press hard on me..

 

copyright Sheila Ethier 2015

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The photo above was captured on Monday, January 21, 2013

In January of 2013 I was on Twitter sharing my Blogger post “My Quest to meet Oprah.” What transpired from Friday to Monday on that cold weekend in January was truly a dream come true.

Here is the post from Blogger:

Friday, January 18, 2013 In three days Oprah Winfrey will be in Edmonton, Alberta, a road trip of approximately 35 minutes from my house. She will thrill the crowds at Rexall Place and I will be at home. My quest to meet Oprah is still grabbing at my heart strings and I am not sure why. I feel connected to her in someway and it’s a bit frustrating because it’s clear that my pleas are not on her radar. So in the spirit of helping the children with cancer, I will keep writing about my son Jason’s story of survival and the late effects of treatment. I will finish my book – Angel In My Pocket and I will do whatever it takes to help my son live a good life. Just another crazy post about me meeting Oprah. Sheila Ethier (9:11 a.m.)

An update to this blog post

Today my words were read by a reporter from a local TV station and as a result CTV Edmonton contacted me through Twitter and asked me to call them ASAP. I emailed the reporter my phone number. Within minutes she called me and said “Sheila, do you still want to meet Oprah?” I said “are you kidding me?”
The reporter informed me that she had read my Twitter post on “My Quest to Meet Oprah” and had shared it with an anonymous donor who had an extra ticket for a Meet and Greet to the Oprah Winfrey event on Monday. He in turn had read my Blog and offered the ticket to me.
Unbelievable, my path is going to take a break from my extraordinary challenges and on Monday, January 21st I am going to meet Oprah Winfrey at Rexall Place in Edmonton, Alberta. Wow. It will be a dream come true. I just hope she’s not wearing a white blouse, because a few years back I had a dream that I met Oprah and she was wearing a white blouse with a stand up collar.
Monday, January 21, 2013
The weekend was a blur. Excitement didn’t course through my veins like I thought it would. I think I was in a state of disbelief.
I took the whole day to scrub and polish every bit of myself. My grooming routine was very thorough and I was smiling on the inside thinking this is it girl, you are going to meet Oprah. Be shining and be bright. Papa, I am going to meet a movie star.
It should be noted that I am not celebrity crazy. I have my feet firmly planted on the ground and star quality does not impress me. The real stars in my life are children with cancer and their families. But my passion to meet Oprah stems from many years of feeling a connection to Angels, children with cancer and knowing that one day I would have to meet this woman who believed in Angels.
As I stand in line at Rexall Place at the private Meet and Greet, I look at the white photo screen and the camera set up for photos and I quickly realize there will be no time for a conversation about children with cancer. Feelings of disappointment set in and I sigh, Oh dear, how will I get her attention? I stand near the area where I think she will appear from and wait patiently. Oprah walks out from behind the curtain in a beautiful purple dress and I am struck with curiosity. She is wearing purple, not the white blouse like I saw in my dream. Interesting.
I was third in line to meet Oprah and have my photo taken. I awkwardly stepped forward with a red rose in one hand and a carefully prepared portfolio of information on childhood cancer and a letter explaining my mission. As I walked toward Oprah one of the security members she had brought with her informed said  “Ms. Winfrey is not accepting any gifts.” The rose and the portfolio were taken from me and placed on a table. I was deeply heartbroken.
At this point I had no option but to walk toward Oprah who is looking beautiful in an exquisite  form fitting purple dress and fabulous heels. I am underdressed and ordinary in the only dress attire I own. And to make my ensemble look like I had never dressed fancy before, I was still wearing the black briefcase over my shoulder. I stood beside her, put my arm around her waist and Oprah in turn put her arm over my shoulder and there we stood side by side smiling for the camera. Oprah is dressed for a photo shoot and I am dressed for an interview.
Oprah says something about smiling for the camera and in a quiet voiced I uttered the words “Hi, I am Blankets of Love, I love you and this is a dream come true for me.” I had offered the name Blankets of Love hoping she would recognize my Twitter name. No acknowledgement of the name was made. Flash, the photo shoot is over and I am whisked away from her.
Walking away from her I said a silent plea to God, “what is the purpose of bringing me here?” I had felt sure this was my opportunity to grab Oprah’s attention for childhood cancer and treatment outcomes. In spite of my disappointment I stood near the area where others where having their photo taken with Oprah. I felt I couldn’t walk away, I had been waiting, hoping and praying for this moment since the early 90’s. I just watched in a mixed state of excitement and sadness.
What now I thought. I came here in a limousine sponsored by the generosity of a stranger, I knew there would be no opportunity to talk to her but, I couldn’t just walk away. I am here now, I just met Oprah and I had my picture taken with her.
As the photo’s were wrapping up I began looking for my 7th row seat in the audience. Still carrying my rose, and my briefcase I find my chair , take a seat and wait for Oprah to appear. I had already seen what she was wearing tonight. I heard some applause from the crowd and caught a glimpse of her walking onstage in a white blouse with a stand up collar.
That’s it, I thought, she’s wearing the white blouse I saw in my dream. From that point on I was mesmerized. I sat in my chair and stared at her for the entire show. And then it happened, at one point in her talk, she was looking directly in my line of vision, pointing her finger in my direction, and she said “everything will be all right.”  Oh my, that’s the same message I heard from my Angel encounter in 1994. Hearing Oprah say the same phrase left me with a sense of great comfort and peace.
I felt a sense of wonderment. I had come to give Oprah a message on behalf of children with cancer and all along she had a message for me.
The excerpt below is part of my journal – “Angel In My Pocket”
In the fall of 1994 I had an encounter with an angel. It was a very brief encounter but it was a profound experience. How do I know it was an angel? Read on.
I was sleeping and my soul encountered a presence that was very pleasing. I was in a place or space that was very peaceful and calm. I had a feeling of wisdom, grace and love. While in this place my soul had a conversation with the presence. I whispered, “Michael,” then I questioned the word
“Mary.” I heard the presence say “everything will 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 the presence left. I received a message of words, “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).
copyright © 2015 Sheila Ethier

This post was shared on Blogger in 2009 Monday, October 19, 2009

There is a chill in the air and a grayness of sky that reminds me that winter is just around the corner. The days are getting shorter, colder and darker. I am talking about both the weather and my mood. I face challenges with depressive illness and today I don’t really have the desire to write this blog about My Quest to Meet Oprah Winfrey.

But here goes: Oprah Winfrey, that girlfriend is my sister. We are connected in a spiritual way. She speaks the same language of love and service that I speak. I always feel compelled to watch her program, read what’s she’s reading and yes, find a way to meet her. Today as I write this I am overwhelmed with the enormity of my goal – to meet Oprah Winfrey.

There are millions of people all over the world who would pay top dollar to meet this remarkable woman, this kindred spirit, this make-believe friend of mine. You see I regularly tell people I am going to be on the Oprah show and it’s remarkable how many people tell me that they believe that I will be. I hear comments like – if anyone can do it, you can, or let me know when so I can tape the show. I like the way their comments make me feel, little pieces of hope in my somewhat gray foggy thoughts.

I have been a fan of Oprah Winfrey since the early 90’s when she launched her Angel Network program. Since that time I have written her letters telling her about children with cancer and how they have transformed my life. I have called Harpo Productions asking if Oprah could come to Edmonton, Alberta and be a motivational speaker for a Gala we would host for childhood cancer research. I have written to Omni hotels the place where her guests stay and asked them if they could get in touch with Oprah for me. I have filled in numerous online request forms “Be on the Show” on her Oprah.com website. I have every issue of the O magazine that Oprah publishes. I am starting to run out of space to store the stacks and stacks of O magazines I am collecting. I follow Oprah on twitter and also follow several of her staff at Harpo Productions.

Do I ever consider that this quest of mine has perhaps become a little out of control? Not most days, only on the mornings when I remember in my night time dreams, there she is right in front of me, shaking my hand and smiling like only Oprah can smile. Not bad dreams to have in the grand scheme of things and considering some of my dreams are about children dying and some are of my son Jason.

You see in 1987, my son Jason was diagnosed with T-Cell Leukemia. He was two years old at the time, today he is 24. Jason received 3 years of chemotherapy to his blood system and 12 radiation treatments to his young brain. Now as a survivor he faces challenges with a brain injury, sterility, and receives monthly hormone injections. Jason and other children like him inspire me to be a voice for them; to improve their quality of life.

For 22 years I have been advocating, fundraising and helping children with cancer here in Edmonton. In 1988 I founded a family camp for children with cancer and their families; that same year we held the first annual Christmas party for children with cancer. I continue to be a parent volunteer of the Kids with Cancer Society. Doing so helps me to deal with my own pain and helps me to make sense of Jason’s ongoing challenges. It is good to be connected to people who know your pain, and parents of children with cancer all over the world, they know my pain.

I take time to thank God everyday. My son Jason is still with us, but over the past 22 years I have come to know many brave children who fought the fight the best they could and in the end the cancer won and they passed on to be with God. I continue to pray for the families who have lost a child to cancer.

I am still on a quest to meet Oprah Winfrey, but in the event that I don’t get a chance to meet her, my journey to help children with cancer continues. I keep volunteering, I keep advocating and I keep praying. I pray for advances in chemotherapy and radiation that cure the cancer, but don’t damage the child. I pray for cures for the many different types of childhood cancers. I pray for an Army of Angels to guard and protect children with cancer all over the world.

God thank you for the journey, it’s been remarkable and if you have the time, can you introduce me to Oprah Winfrey?

from the desk of: Sheila Ethier

copyright © 2015 Sheila Ethier

In the winter of 1987 after Jason’s diagnosis with T-Cell Leukemia his treatment included 12 days of radiation to his young 2 year old brain. The treatment was given many years ago, but Jason still has challenges living with a brain injury from the radiation treatment.

As Jason ages, he is at risk of early on-set dementia. I will mention Jason’s fears of acquiring dementia in another blog.

I am sharing this Journal entry to show you when life changed for Jason and our family.

Thursday, December 17, 1987

Cycle 3 – day 50 Labs – CBC

Day 66

Jason is fitted for cast mold of head to make plastic mask for radiation. The treatment includes 2400 cGy rads of cranial radiation to kill leukemic cells that may have crossed the blood/brain barrier. The complete dose of radiation is carefully calculated and measured to be given over 12 days. The plastic mask will be used to secure Jason’s head to the treatment table, so there can be no movement and the radiation beams are to hit precise targets of the brain. The goal is kill cancer cells but not kill healthy cells within the brain. Radiation kills any cell that comes into its path.

Tuesday, December 29, 1987

Day 71

Day 71 is put on hold twice for low blood counts, it was scheduled for December 18 and then again on December 22.

Chemotherapy – Vincristine, Prednisone and Adriamycin.

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

Bone marrow aspiration

Labs – CBC, CSF,

Chest X-ray

First day of cranial radiation. Jason would not lie still.

The room was huge and it had a long stretcher like bed and the machine that would deliver the radiation. I truly cannot describe what the medical equipment was like. I just see Jason, 2 years old lying on this adult size stretcher with his head secured tightly by a plastic head mask that was bolted to the stretcher. He was awake and crying and flailing about on the stretcher. I was on the other side of the wall with only visual access through a window and the Radiation Oncologist is telling me I better calm my son down, or the radiation will destroy his brain. I looked at him and said “how am I supposed to comfort him from here and of course he’s crying, his head is bolted to the table!”

I know he was just doing his job but, the threat of destroying my son’s brain with radiation was a ridiculous comment to make. I told him to stop the procedure and I went into the room to comfort an inconsolable Jason. I then went upstairs to speak to the Pediatric Oncologist and explained that Jason will not lie still for the radiation and that the Radiation Oncologist was asking me to keep him perfectly still to prevent radiation damage. By this time I was crying.

The Pediatric Oncologist was very kind and gentle and assured me that the treatment will be given safely and the plan will be to sedate Jason for all 12 treatments. He then ordered the sedation and escorted us down to the Radiation unit and he stood beside me while Jason received his first carefully titrated dose of radiation to his brain. I can still see that day clear in my mind.

Wednesday, December 30, 1987

Day 72

Cranial radiation.

Thursday, December 31, 1987

Day 73

Cranial radiation.

New Year’s Eve. Happy New Year. Cancer and the treatment does not celebrate holidays.

Monday, January 4, 1988

Day 77

Cranial radiation

Tuesday, January 5, 1988

Day 78

Cranial radiation

Chemotherapy – Vincristine, Prednisone Labs – CBC

Wednesday, January 6, 1988

Day 79

Cranial radiation

Thursday, January 7, 1988

Day 80

Cranial radiation

Friday, January 8, 1988

Day 81

Cranial radiation

Monday, January 11, 1988

Day 84

Cranial radiation

Tuesday, January 12, 1988

Day 85

Cranial radiation

Chemotherapy – Vincristine, Prednisone

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

Labs – CBC, CSF

Wednesday, January 13, 1988

Day 86

Cranial radiation

Thursday, January 14, 1988

Day 87

Cranial radiation

Friday, January 15, 1987

Day 88

Cranial radiation.

Last day of Radiation

Tuesday, January 19, 1988

Day 92

Chemotherapy – Vincristine, Prednisone Labs – CBC

Protocol was randomized to Treatment 1

Tuesday, January 26, 1988

Day 99 and Day 1

Last day of induction/consolidation phase.

First day of Treatment 1 – Maintenance

Cycle 1 – day 1

Chemotherapy – Cytosine Arabinoside (AraC) and Cyclophosphamide. The AraC is a continuous infusion that will be administered for 72 hours. The Cyclophosphamide is given by IV push every 12 hours for 3 days. This treatment requires hospitalization so Jason will be admitted to unit 4E2 for chemo.

Labs – CBC, creatinine, SGOT, bilirubin and urinalysis

Prior to admission to the children’s hospital Jason has to go the Cross Cancer Institute to have blood work to ensure his absolute neutrophil count (ANC) is greater than 500/uL and his platelets are greater than 100,000/uL. If the blood counts are OK we pack up the stroller and rush to the children’s hospital 3 blocks away. Once admitted there he has to be seen by the resident on call for Peds Oncology and wait for the orders to be written in the chart.

We left the house at 8:00 in the morning with bags packed for a 4 day stay in the hospital. It is a long day of waiting for news and for chemotherapy. Today chemotherapy starts at 9:00 p.m. Jason stops vomiting at 4:00 in the morning.

Wednesday, January 27, 1988

Cycle 1 – day 2

Chemotherapy – continuous infusion of AraC and Cyclophosphamide IV push every 12 hours.

Yellow flannel pajamas

Flannel yellow striped pajamas can render me helpless and filled with fear. When I see them I return to those early days in October 1987. They aren’t pajama’s you would find in a clothing store, they are hospital issue pajama’s for children and come in a variety of colors, green, yellow, blue, and pink. Different colors for different sizes, I don’t remember if the pink ones are for babies or for teens. I do remember that yellow is the color for toddlers and that blue is for the next size up. Jason wore the yellow pajamas for three years and for the last few months of treatment he wore the blue pajamas.

Thursday, January 28, 1988

Cycle 1 – day 3

Chemotherapy – continuous infusion of AraC and Cyclophosphamide IV push every 12 hours.

Friday, January 29, 1988

Cycle 1 – day 4

Chemotherapy – AraC infusion is complete by 9:00 p.m.

I don’t recall if Jason was discharged tonight or if we went home the next day.

Sunday, January 31, 1988

Cycle 1 – day 6

Jason fell down the stairs.

The skin on the top of his head peeled off like and orange peel.

Went to hospital to have him examined. CBC results are WBC 300/uL and RBC 8.2/uL.

Fast forward to:

Thursday, December 6, 2012

Over the past year Jason has reported to me that he is having more problems with his memory. I listened to his concerns but really didn’t know how to address them so I said nothing. Then at the Christmas party for children with cancer, he blurts out to his wife Nicole and me “one day I won’t know who you are.” He then says “I am going to be worse than Grandpa.”

Plunk my, heart falls to the floor and I said “you might get dementia from the brain injury but you will always know who I am.” Nicole looks at us and says “what are you talking about?” And right there in the coat check room at the Christmas party Jason has been attending since he was 2 years old, I say “maybe there is a risk of dementia because of your brain injury but that’s only when you are old.” I don’t relay my fears of early onset dementia as a side effect of cranial radiation because I hadn’t found any literature supporting my fear.

This summer when my father had the brain bleed and he was very confused and restless. I did an internet search of the symptoms of brain injury and dementia. I noticed that the symptoms of dementia were similar to the symptoms I had become familiar with in regard to cognitive impairment from cranial radiation.

I started to wonder if Jason has the symptoms of dementia now as a young man, what is going to happen to his brain as it ages. I didn’t like what I was beginning to learn. I asked a few Doctors for their opinion and I tried to find studies on long term survivors who received radiation and dementia. I came up empty handed but, my gut feeling was pushing me to keep searching.

Then on December 5, 2012 when I entered my search on the Internet up came a paper that was to be presented on December 10, 2012 at the American Hematology Society in Atlanta, Georgia by a group of researchers from St. Jude’s Children’s Research Hospital.

It looks like its ground-breaking research addressing early onset dementia in childhood cancer survivors. I contacted the lead researcher and asked a few questions. The researcher was kind enough to reply to my query. He said Jason is the reason we do these studies. He indicated that presently the dementia in the survivors didn’t appear to be severe but, we have to do further studies to see what their outcomes are.

I am afraid. How does Jason feel? I can’t imagine.

 

 

copyright Sheila Ethier 2014

 

Saturday, December 27, 2014                                    

There have been times when I have considered changing the title of my book to – Notes to My Psychiatrist. Much of what I write about is related to my challenges with depression or post traumatic stress disorder symptoms from Jason’s chemo days.

On a recent visit to my Psychiatrist, she expressed concern that my quality of life was impacted by PTSD and she wanted to help me. She suggested a treatment called Rapid Eye Movement Therapy that is being used to help army veterans who have PTSD.

I listened to her description of the therapy and asked her how long the treatment would be and how much it would cost. She said some patients are on treatment for a year and each session is a 3 figure cost that I won’t mention here. I scrunched up my nose and said “I don’t know.”

My thoughts expressed were that I could never afford the treatment, and I felt my memories have a significant meaning in my life. My experiences have made me the persons I am today. Yes, there has been much suffering, but it is a part of me. I then told her that when I am struggling with the darkness of depression I pray the Rosary.

Politely, she said “you can’t pray all day long.” I just looked at her and smiled. If only she knew how often I pray little snippets of the prayers – Our Father and Hail Mary. I wanted to tell her of words I read in the bible “pray without ceasing” but I couldn’t remember the place in the bible that held those words. For this journal entry I found the words in the bible: 1 Thessolonians 5:17.

And I also wanted to remind her of what the Angel told me in 1994 – The presence told me to pray and left me.

On my next appointment with my Psychiatrist I will tell her about that verse. I will also tell her how the little prayers I say help get me out of some dark, desperate, fearful moods. Every day I feel like crying, so I silently pray to Mary. When the energy is sucked out of me like a strawberry milkshake I pray to Mary and for good measure I throw in words from the prayer – Our Father.

As the freshness of the morning wanes and I don’t have any interest or passion for anything, I pray. When fear creeps in and I am too afraid to leave the house I pray some more. At night when it’s time for sleep and I can’t settle I listen to a TV recording of the Rosary from the EWTN channel. And when I have dreams or strange sensations that I feel during my sleep I can hear myself praying the Rosary.

For the challenges of depression and PTSD it’s good that I am able to be supported and treated by a wonderful Psychiatrist that I trust and am comfortable with. But I don’t take enough time to thank the master healer, the wonderful counselor, the great comforter, the Lord of Lords, My God.

Thank you God, for always leading me through the darkness toward the light, toward a brighter tomorrow. For showing me what Love is, what Charity is, what Faith is and what Joy is.

Blessed be the Lord God Almighty.

 

copyright Sheila Ethier 2014