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

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.