Sunday, November 10, 2013

I am sipping on a latte at Starbuck’s, something I rarely do now. Since my father’s diagnosis of dementia my routine of daily walks of walking, stopping at a local cafe bar for a latte and writing has virtually been non-existent. My new routine of taking dad to Tim Horton’s for his morning coffee has had a huge impact on me. Day after day of watching his cognition decline to repetitive phrases, no awareness of seasons or dates, and perpetual confusion have marked my soul in ways I never imagined.

The past year has been very hard on my family as we settle into a routine of taking care of dad and keeping him out of a nursing home. It’s really only been the past few weeks where I have been able to do both, take my dad for morning coffee and then wipe away my tears and find the courage to go for a walk.

Yes, I have been crying more. Just spent the last 3 days hibernating at home, too many tears to leave the house. Today is Sunday. This is the day that the Lord has made and I forced myself to leave the house and go for a walk. Last night I had a dream of the path by the river, and in the dream I was back in my grandparents’ house. Their house was on the corner lot of Mission and Perron Street and the back yard was on the bank of the Sturgeon River. When I woke up from my dream I felt a longing to be near the river.

I made a plan, to walk to the river, lie down in the snow and make a snow Angel. It was easier bundling up in snow pants, winter jacket and mitts and walking the 15 minute walk to the river knowing that I had a mission. When I got to the spot I had already chosen in my mind I looked down at the fresh white blanket of snow and thought to myself, “How will I ever get up again?” I giggled to myself and gently lowered myself to the ground. I could feel the cold wet snow touching my ankles as I tried to get in position for the perfect snow Angel. Looking up at the grey sky with snowflakes falling on my cheek, I laughed and moved my arms and legs in snow Angel fashion. I did it, and in one tiny moment I felt like a kid again. Free, and happy. I didn’t even mind the pain in my joints as I tried to get myself up out of the snow bank and back on my path.

My steps felt somewhat lighter as I continued on my walk by the river in the cold and the snow. I should definitely make snow Angels more often.

I am here now, at the second destination on my journey today. Sitting in Starbucks looking out the window at the parking lot where on a cold winter day in December of 1999, I had the personal revelation “there must be an Angel in my pocket.”

I am still writing my story and know the title will be “Angel in My Pocket.” What is not clear in my mind is whether I am writing 2 books or just one. I have one book that is outlined with my angel encounter and Jason’s chemotherapy days. And the other book is just this one, my journal, a continuation of Count it All Joy.

I have not been able to write about chemo days for the past 12 months. Last year I did have a steady pace of going back to the yellow flannel pajama days but then dad’s battle with dementia has stopped me from reliving the chemo days of 87. There was single parenthood, nursing school and childhood cancer all enveloped in a bundle of pain and my mother and father were there every step of the way. I haven’t quite been able to go back to the hospital room days where dad watched Jason while he was getting chemo, and mom was at home taking care of Brandon and I was in nursing school trying to study so I could provide a good life for my boys.

I am waiting on God, to give me the peace and the courage to go back to those days that have mad my soul in such a profound way.

Wednesday, December 24, 2014

Tomorrow is Christmas Day and dad has no idea it’s a holiday. Christmas was his favorite time of the year and he loved telling us stories of seeing Santa in the North Pole on his last truck run to Whitehorse. He always brought home a fresh evergreen tree cut from some field on the drive home from the north trips he made.

We are truly blessed to still have dad at home with us. The gift of time we have is not lost on us.

Jason’s chemo days will be written one day. But for now I just want to enjoy precious moments with my dad and my family. Merry Christmas

 

copyright Sheila Ethier 2014

Wednesday, December 10, 2014

I still have the red felt hand made Christmas stockings from Jason’s chemo days. There are seven of them and I store them on the top shelf of my closet. They are reminders of Christmas holidays when my son’s were young.

Not your typical reminders of a childhood’s Christmas. The Christmas stockings filled with yummy treats and a small toy were given to Jason each year in the month of December from 1987 through to 1993. It became a tradition to go the Cross Cancer Institute for blood work, a physical exam, maybe a round of chemo and just for a special treat a spinal tap. After all the treatments Jason would receive a stuffed toy and the red felt Christmas stocking.

On the car ride home from the clinic Jason would start eating the candy from the stocking and I would be worrying about how I could get my hands on a similar toy for the brother left at home. Brandon and Jason a mere 18 months apart were always competing for the same toys. To keep the peace the mothering instinct prompted me to stop at the mall on the way home and find a chemo prize for Brandon.

One particular Christmas the stuffed toy Jason received was a cute little puppy made by Gund and I had the good fortune of finding one just like it for sale in the gift shop of the hospital. It was incredibly important to me that I include Brandon in the gift exchange from the clinic. I wasn’t able to offer Brandon the little Christmas stocking but I had in my hands the same toy puppy that Jason would carry into the house.

Chemo days were brutal for Jason physically and hard on Brandon emotionally. Both children were not ready to grasp each other’s struggles, just youngsters wanting to play with the toys at hand. I was sensitive to their pain and did all that I could to make sure each child was happy and content.

The boys are grown men and don’t recall the chemo days in great detail. It is me that carries the chemo days in my mind, memories that have marked my soul forever. With each memory rises deep emotions. Emotions that fit no legible description to be scribbled on this page.

The stockings are hung by the chimney with care, 7 of them. Bright red felt stockings, hand made and empty now. I lay them on the mantle one by one, and I name them: Pain, Sorrow, Hope, Faith, Charity, Love and JOY.

7 Christmas Stockings

 

copyright Sheila Ethier 2014

Christmas is approaching and I am still captivated by the children with cancer who have touched my soul. This is an excerpt from my journal recounting the story of a very special girl who moved me in a profound way.

Tuesday, November 16, 1999

Jason and I are ill with the flu. Brandon is feeling rather well so, he is the designated cook and errand boy. Whenever we need anything we just call out his name and he gets us what we want. Right now he is gone out with my little white car. I guess we made him tired and he needs a break. Jason is finally sleeping. He has been awake since 4:00 this morning with the stomach flu. Needless to say the washing machine has been cleaning towels, sheets, blankets and clothes for several hours now.

The routine was easy for me to complete and it reminded me of chemo days and sleepless nights. My patient is now the size of a grown man but he still calls out for mom when the pain bothers him. Jason was in tears at one point and I felt the familiar panic in my gut. I quickly acknowledged the emotions and told myself not to worry because this is only the flu.

Christmas is just around the corner and there is much to prepare for the kids with cancer Christmas party. Common sense warns me not to get involved in organizing the party. But my passion to see sick children happy over rules common sense and guess who’s going to the 12th Annual Christmas Party? That would be me.

I can still remember that first party at the Garneau Community Hall. The party was initiated, to help one little girl know the Joy of Christmas. Her name was Ashley and she was 2 years old. Ashley and her family came to the party that was held in her honor. There was a blur of activity with clowns and Santa Claus, music, laughter and good food. The afternoon went by very fast. All of the families that were there enjoyed the event.

Sadly, Ashley passed away that evening, Sunday, December 11, 1988 at the University of Alberta hospital. Her parents had thought she would be with them to celebrate Christmas Day. They had no idea that would be their last party with their beautiful little girl.

Ashley must be an angel. Why do I say this? One day, Ashley’s parents invited the boys and me over for supper, for me it was a remarkable visit.

In a spirit of love, Ken and Dawn gave their daughters Ashley and Carley an early Christmas. It was November and they had decided to put the tree up early. Dawn handcrafted most of the delicate ornaments. They were delightful little creations Dawn and Ashley made to help Dawn deal with the news the doctors had given her. That Ashley had relapsed again and this time there was no other treatment to offer her.

Ashley loved her tree and kept pointing to the ornaments, I picked her up and she reached toward the top of the tree where Dawn had carefully placed a beautiful angel. With bright sparkling eyes Ashley kept saying over and over, Ashley angel. With a lump in my throat, I replied, Yes Ashley, you are an angel.

Dawn and her two daughters, Carley and Erin still come to the Christmas Party to remember Ashley. Ken, one of the sweetest fathers I know, just can’t bring himself to return to the party. He usually spends the day keeping busy and he remembers his baby in his own special way.

 

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

Journal entries from 2008 and 2009.

December 10, 2008 

On the other side of a dark cold snowy day is a miracle. The sky is blue, the sun is shining and the snow is fresh, white and clean.

Today is a miracle day for me. I can see the trail of pain. I have plowed through the trenches and today I am on the other side of pain. I feel Joy. I feel promise and I feel hopeful.

December 26, 2008

I have just realized that all of the entries I have written in my journal are leading up to the story of Jason’s diagnoses with T-Cell leukemia. I keep mentioning Jason’s battle for life but I don’t really feel strong enough to write about the story.

It’s one thing to remember little pieces of the journey, the smell of the room on the unit in the hospital, the shape of his bald head and the feel of the flannel yellow striped pajama’s. The fleeting images are constant reminders. There is a story to tell but, how do I find the right words to describe those days; how they crushed my soul and continue to haunt me.

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.

As I write this, my stomach is feeling queasy, my eyes are moist with tears and my neck feels tense and achy. As I look around the café I get the sense that I should stop writing and read a book.

I do a walk about through Chapter’s looking at all the books, all the stories. Which one is for me? I feel nervous about choosing a book. What if the story brings me back to pain? What if the story speaks to my soul in a sad profound way? I am writing that story, I have lived that story, and I don’t really want to read that sad story.

Sunday, October 25, 2009

As a person with double X chromosomes I come by my gathering instincts naturally. As women it is said to be within our genetic DNA that we will leave the home to gather food, clothing and other necessities of life for our family. The gathering of things keeps me busy and somewhat distracted from my sadness. If my mood drops while I am out, I talk myself into staying out as long as I can. I run errands and I gather things.

My sadness is deep, profound and all consuming. Today my day will start with a passion filled prayer to God that I live the day with purpose and meaning. I will then head out for my daily walk. Walking in the community that I have lived in for over 50 years usually lifts my mood and fills me with enough energy to find a café and read from a favorite book.

It’s 10:00 in the morning and time for me to fall on my knees and pray. Thank you Lord for my two sons, thank you for all the blessings in my life. Let me feel some measure of Joy today. God you are an awesome God.

 

copyright Sheila Ethier 2014

 

 

October 24, 2014

The memories of chemo days don’t come back to me in the ordered days of the protocol assigned to Jason. They come back to me in little bits and pieces, like fragments of time locked forever in the pathways of my mind. Children’s toys, yellow flannel pajamas, toddlers running down the corridors of the hospital, lab results printed on a sheet of paper and cursory glimpses of WBC’s & neutrophils; the list is unending.

My attempts at writing chemo days has come to a halt.

In the spring of 2012 I had finally summoned enough courage to the file folder containing the copy of the T-Cell Leukemia protocol and the calendars marking the entire 30 months of treatment. I entered all the information on calendar app on my iPad.

Once the facts were entered I began writing the details of the first couple of months of treatment. I had a good rythem of recalling the events of chemo days. And then my dad was diagnosed with a brain bleed and dementia. The story was hard to write due to recollections of my father’s role in charing for my sons. I kept reliving the days of me in nursing school and my father sitting at Jason’s bedside while he was getting chemo. Promises made to my parents that I would pay them back for the support they provided during chemo days So many days, so many memories.

In the fall of 2012 I lost my writing voice. I lost my vision for the book “Angel In My Pocket.” You see, I wanted my memories to come back in order of the days numbered on the calendar. But, memories don’t come back in order. They just appear.

Two days ago I saw a wooden toy train on display in a store. I was walking to the back of the pharmacy to pick up a prescription and out of the corner of my eye I spotted the train set. I was immediately drawn to the toy on display and as I looked at the train, the wood & the magnets, I could feel my pulse quicken, my stomach knotted and I wanted to run.

I didn’t run away, I just kept staring and let the memories flow. I was suddenly back on the toddler unit at the hospital, Jason is 3 yrs. old and is wearing royal blue pants and a shirt with white sleeves and red and blue squares patterned on the front. IV tubing is connected to his central line catheter and hanging out from the bottom of the shirt as high dose antibiotics are being infused. Jason and I are in the reverse isolation room as his bone marrow is suppressed from chemo.

Like a video recorder I can see it all so clearly. Jason is sitting on his bed playing with the wooden Brio train set. It’s his favorite toy in the child life playroom but this day he’s not allowed to leave the isolation room. The train was purchased for long days spent in hospital rooms.

I press pause on the reel of memories and continue on with my errand. There will be tears today. That’s what chemo memories do to me.

 

copyright Sheila Ethier 2014

 

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Tuesday, November 24, 1987

Day 43

Chemotherapy – VM-26 and Ara-C

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

Labs – CBC, CSF

Weekly visits to the Cross Cancer Institute begin.

Jason begins his weekly follow up at the CCI. Every week for 2 1/2 years Jason and I would spend one day at this cancer facility. Some weeks we would go for two days. And when Jason received 2400 cGy rads of cranial radiation we went for 12 days straight with weekends off.

At that time there was no dedicated children’s hospital. Children with cancer were often admitted and diagnosed at the U of A Hospital on the unit that specialized in Pediatrics. Children who required chemotherapy for several days were admitted to the U of A Hospital for treatment. For chemotherapy treatments that could be given in one day children were required to go to the Cross Cancer Institute (CCI). The Pediatric Oncology Outpatient Clinic was located at the CCI.

Thursday, November 26, 1987

Day 45

Chemotherapy – VM-26 and Ara-C Labs – CBC

Outpatient clinic days were booked early in the morning.

Routine: check in at front desk, go to Peds Clinic and pick up lab requisition, go to lab for a finger poke, get a prize, wipe away the tears, go back to Peds Clinic and wait with other scared parents for your turn. There was a playroom for the kids to play in. Very helpful. Jason would be called for his physical exam. By this time an hour or two has passed and his blood counts are back so they can determine if his neutrophil count is high enough to receive chemotherapy.

On this day counts are good, so we go upstairs to the adult outpatient clinic and Jason’s Broviac catheter is connected to an intravenous line that will deliver two types of chemotherapy. It takes a few hours and we don’t leave the Cross Cancer Institute until 4:00 in the afternoon.

Jason starts vomiting on the drive home and I have garbage bags beside him to collect the vomit as I drive the car. Sometimes there just aren’t enough garbage bags and puke happens all over the car.

There is nothing quite like the chemo vomiting I witnessed. It’s not like Flu vomiting it has a life of its own. From the moment Jason started to vomit at around 4:10 p.m. until 5:00 a.m. he would wretch and puke every 20 – 30 minutes.

We had a king size Ikea family bed. When Jason and I got home from the clinic we would go straight to the big bed. I was emotionally and physically exhausted, on one side of me was my 4 year old son Brandon playing with his trucks and cars and on the other side of me was my 2 year old son Jason puking in the pail we referred to as the puke pail. It was our family time.

Tuesday, December 1, 1987

Day 50

Chemotherapy – VM-26 and Ara-C Labs – CBC

 

copyright Sheila Ethier 2014

 

While my two year old son Jason was receiving chemotherapy in the hospital I envisioned his room to be a place of holiness and I prayed on the Holy Ground of the Hospital floor.

The following is an excerpt from Chemo Days 87 – Angel In My Pocket

Sunday, November 1, 1987

Day 24

Chemotherapy – continuous infusion of high dose Ara-C

The unit Jason was on was the toddler unit for children aged 2 to 5 years old who had various pediatric illnesses. The unit had 7 semi private rooms 4 isolation rooms for a total of 18 beds on the unit. Outside the door of each room was a little white plaque with the room no and some space to write in the child’s last name. After the name was written a little colored dot was put beside the name. This would indicate the type of pediatric specialty the patient was admitted to.

Green dots were for children with cancer. This is how the other parents knew I was about to join their group. Jason’s name had a green dot beside it, the telltale sign he had cancer and the seasoned moms wanted to come and offer their support.

Our conversations generally started with “what type of cancer does your child have?” and we shared stories of diagnosis. Our vocabulary increased to include words like, fatal, terminal illness, poor prognosis, bone marrow taps, lumbar punctures, neutrophil count, sepsis, and cancer was oncology and we were pediatric oncology parents. Through a cell mutation with no DNA our children had some form of pediatric malignancy and we all belonged to a new world for which we had not signed up or prepared ourselves for.

I learned there are many different types of childhood cancers. Too many to learn about.

Monday, November 2, 1987

Day 25

Chemotherapy – continuous infusion of high dose Ara-C

Child life playroom

Tuesday, November 3, 1987

Day 26

Chemotherapy – continuous infusion of high dose Ara-C

The room on the nursing unit has become our home. A crib, a cot, a rocking chair, a cupboard, a suitcase for me with clothes and toiletries and a suitcase of toddler clothes and lots of toys from home to keep Jason occupied. And a tape recorder with Christian music that filled the room with songs like “Holy Ground.”

I was devoted to prayer and worship to God. I would pray for an army of angels to protect and guard Jason as chemotherapy was being infused in to his tiny body. I prayed the chemotherapy would kill the cancer but not destroy the child.

Wednesday, November 4, 1987

Day 27

Chemotherapy – continuous infusion of high dose Ara-C and L-Asparaginase IM

Friday, November 6, 1987

Day 29

Chemotherapy – Vincristine and L-Asparaginase

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

Labs – CBC, urinalysis

Discharge from hospital.

copyright Sheila Ethier 2014

 

Entries from journal on chemo days.

Friday, October 23, 1987 

Day 15

Chemotherapy – Vincristine

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

Labs – CBC, CSF

Jason hasn’t lost his hair yet and I am avoiding talking to the other parents. I see the little children with bald heads, pale faces and dark circles under their eyes. They usually wear yellow flannel pajamas and they all look the same to me. Sick and maybe dying. Now my son is sick and maybe dying. He isn’t bald yet.

I remember their faces, the parents reaching out to me, trying to comfort me. But I was not ready. I turned the other way every time they approached me. I was afraid to look into the face of the little kids with no hair. Please don’t come and talk to me. I am not ready yet. If you talk to me then it’s real; my son really does have cancer and soon he will be bald.

And then it happened. One morning Jason’s hair started to loosen itself from his scalp. I would hold him and a pile of hair would cling to my sweater. For me it was very messy and upsetting. Instinct told me to take him downstairs to the salon in the hospital for a head shave. The baldness was instant, it was over quick and there was no mess. That was the last day I was afraid to face the head of a child with no hair.

Friday, October 30, 1987 

Day 22

Chemotherapy – Vincristine, Cyclophosphamide and high dose Cytosine Arabinoside (Ara-C)

Labs – CBC, urinalysis, chest X-ray

Bone marrow aspiration and results are clear – Jason is in Remission.

Hurray, big celebration and small sigh of relief. One could assume that the treatment worked, we could go home and the nightmare was over. But, it wasn’t I signed consent for the protocol POG 8704 and that meant at least 2 years of treatment.

Saturday, October 31, 1987

Day 23

Chemotherapy – continuous infusion of high dose Ara-C

Trick or treat in the hospital. All the kids dressed up in costumes and we toured the units as a group collecting little treats. For me it was the creepiest Halloween ever.

Sunday, November 1, 1987

Day 24

Chemotherapy – continuous infusion of high dose Ara-C

The unit Jason was on was the toddler unit for children aged 2 to 5 years old who had various pediatric illnesses. The unit had 7 semi private rooms 4 isolation rooms for a total of 18 beds on the unit. Outside the door of each room was a little white plaque with the room no and some space to write in the child’s last name. After the name was written a little colored dot was put beside the name. This would indicate the type of pediatric specialty the patient was admitted to.

Green dots were for children with cancer. This is how the other parents knew I was about to join their group. Jason’s name had a green dot beside it, the telltale sign he had cancer and the seasoned moms wanted to come and offer their support.

Our conversations generally started with “what type of cancer does your child have?” and we shared stories of diagnosis. Our vocabulary increased to include words like, fatal, terminal illness, poor prognosis, bone marrow taps, lumbar punctures, neutrophil count, sepsis, and cancer was oncology and we were pediatric oncology parents. Through a cell mutation with no DNA our children had some form of pediatric malignancy and we all belonged to a new world for which we had not signed up or prepared ourselves for.

Monday, November 2, 1987

Day 25

Chemotherapy – continuous infusion of high dose Ara-C

Child life playroom a lifesaver.

Tuesday, November 3, 1987

Day 26

Chemotherapy – continuous infusion of high dose Ara-C

The room on the nursing unit has become our home. A crib, a cot, a rocking chair, a cupboard, a suitcase for me with clothes and toiletries and a suitcase of toddler clothes and lots of toys from home to keep Jason occupied. And a tape recorder with Christian music that filled the room with songs like “Holy Ground.”

I was devoted to prayer and worship to God. I would pray for an army of angels to protect and guard Jason as chemotherapy was being infused in to his tiny body. I prayed the chemotherapy would kill the cancer but not destroy the child.

copyright Sheila Ethier 2014

 

In 1988 I founded a family camp for children with cancer and their families. I was a single mom of two sons and my youngest had T-Cell Leukemia. I created the camp for my sons and for other families for the purpose of bringing laughter, sunshine and hope into our lives. This is an excerpt from my journal about camp and my good friend Lindsey. I love you Lindsey, miss you and will never forget you.

Saturday, September 5, 1999

They come together every September long weekend to meet with old friends and make new friends. On Friday afternoon, they pack up all their worries, sorrows and fears and tuck them into the quiet corners of their soul. Thirty families pack up the car with treasures from home and drive to Camp Health Hope Happiness on Lake Isle, Alberta.

The first few miles of the journey are filled with excitement as kids wonder if their friends from last year are coming to camp and parents mentally do a checklist, is there film for the camera, did I pack the sunscreen, did the kids bring a toothbrush. Twenty minutes into the journey someone says, Oh dear, I forgot my jeans. Mom says forget it, we’re not turning back. Dad is wondering how he’ll get through the next few days. He really doesn’t want to go to camp because he’s worried about paying the bills and he’s also thinking I don’t think I want to spend the weekend with sick kids. Childhood cancer is not something he wants to deal with or think about.

Finally, we’re at camp. As families arrive they look for the camp committee to receive their information package, room assignment and a bag full of goodies for the kids. Introductions are made. The first night is an informal get-to-know you time. By 9:00 p.m. most of the families have arrived and are meeting at the center court to chat with old friends and encourage new ones to take part in the weekend’s activities. Laughs, smiles and good conversation are always plentiful around the first campfire.

Families soon realize that it is here at camp that they have found comrades who share the same agonizing pain and few explanations are needed. New families see hope for the future, long-term survivors see friends who know what the battle is like. They all find comfort and support in knowing that they don’t have to face the pain alone.

The four days go by very quickly and all kids say, “mom, dad, why can’t we live here all year?” Siblings, who feel lost and alone while their brother or sister suffers through the treatments, now feel like a part of the family again. They all see that here at camp there is acceptance, friendship and love.

I have been involved with the family camp for 12 years now and I would like to believe that heaven is just like camp. No worries, no fears, only sunshine, fun and lots of love.

This year is a difficult year for me to smile and play because I still haven’t been able to deal with the devastating news that two of my special friends are on treatment again for the third and fourth time.

I spotted Lindsey right away. Her family had just arrived for registration.  I looked at her and I had nothing to say. There were no words of comfort, support or wisdom. I did not know how to tell her how sorry I was to learn that the cancer had returned.

We just looked at each other. She must have sensed my nervousness about the whole thing because she flashed a silly grin at me. I reached out to her and gave her a hug. It was O.K. now. I knew I wouldn’t have to say anything profound or intelligent. I knew at that instant that she would help me. I could see years of hard times in her 15-year-old twinkling eyes.

She was the hero, the brave one and quite possibly stronger than me. If I was Lindsey, I don’t think I would come back to camp. I am sure I wouldn’t feel like swimming, canoeing, eating hot dogs around the campfire and singing happy songs. I’m sure I would be grumpy and not overly interested in doing anything. But cancer, chemo and losing your hair is, the only life that Lindsey knows. She was two years old when she was first diagnosed with liver cancer. Today she is 15 years old and is facing her fourth battle for survival.

She is a source of energy, wisdom and hope for all those who know her. Her parents marvel at her refusal to give up. I still don’t know what to say.  Maybe I’ll just say you inspire me Lindsey and I love you very much.

Monday, October 11, 1999

Today is Thanksgiving Day. Engraved in my soul is the anniversary date of Jason’s diagnosis with Leukemia. The sadness of the whole thing creeps into my skin and I become restless and carry a sense of foreboding that destroys my ability to accomplish anything.

So, I sleep for extra hours during the day until the holiday passes and I can continue with my normal routine. Yesterday every part of me ached with sadness. This morning I feel a bit better.

 

copyright © 2014 Sheila Ethier