This past weekend a friend of mine passed from this world to be with God. She wasn’t just a casual friend, she was a pediatric oncology parent, a kindred spirit, a lady who knew what I know: that childhood cancer is a life long journey. But she also knew one extra thing that I haven’t had to experience, what it feels like to have cancer.

Since 1987, I have met many parents who were told “your child has cancer.” And unfortunately some of these parents were also diagnosed with cancer. The number is to great for me to recollect in this moment of grief but, if I had to make a case for cancer and a genetic component I would be convinced.

I can still remember the day my friends daughter was diagnosed with cancer. Jason was one month into his own treatment for T-Cell Leukemia when we met this new family. We walked the corridors of the hospital together as our children were hooked up to IV pumps that delivered chemotherapy for the cure. This new family came to the first Christmas party in 1988 and we became comrades in our children’s battle for survival.

Today, I cry tears for my dear friend who fought her own lengthy and fierce fight with cancer. When you are crying and not quite sure how to fully express some of the moments you shared with other parents it’s handy to go back to old journal entries. Here are two entries I made in my book “Count It All Joy.”

Two small entries in my book are just a tiny tribute to this incredible woman and her family. But, my pain is so layered and complicated that I have lost my words. So this will have to suffice.

Rest in peace, my friend and rejoice in the glory of God. You were a gift to all who knew you.

from Count It All Joy:

Monday, April 14th, 1997

Today I awake with pain in my heart. I want to scream! Instead I hug my puppy, T.J. I then spend 30 minutes on personal hygiene. I try to look good on the outside, hoping I will feel better on the inside.

As hard as I try to feed, clothe and entertain my children…despite the many kind people who have shared their prayers and gifts with us, there remains a pain within me that I cannot escape. I will look for beauty, romance and JOY today.

I have the pleasure of driving Ashley and Michael to school. Ashley is 12 years old and is fighting her second battle with leukemia. She was two years old when she was first diagnosed. Last summer, after camp, she wasn’t feeling well, and the doctors found that the abnormal while blood cells had invaded her bone marrow once again. Ashley is very quiet and brave as she faces the challenges put before her. The least I can do is to drive her and her brother Michael to school when her parents need help. The two of them have been a wonderful gift to me with their teasing and joking natures.

Tuesday, May 6th 1997

This morning I shaved my head. Why I am not sure, but afterwards I felt very pleased. Both with the new look I created and with the freedom I felt in being allowed to shave my head. Through the shaving, the trimming and the cleaning, it suddenly occurred to me that fear is what causes my physical pain. For a few brief minutes I felt freedom, happiness and Joy.

In the small bathroom of white and soft pastels, there was my body in the skin nature gave me, hair falling to the floor. I had control of the razor. “Shaving and Freedom!” I said to myself.

This is for you Jason, Ashley, Gloria and all of my friends who are bald. Shaving and Freedom! I thought, “This is what cancer and the treatment does to you. You become bald, cells in your body change or are destroyed, you have no control and fear robs you of happiness.”

Saturday, February 6th, 2016

Yesterday was another day of broken hearts. As I sit here at my computer I am not sure how to tell you this story.

Once a year my son Jason goes to the Pediatric Oncology Late Effects Clinic for follow-up. Yesterday was his appointment and as he is now 30 years old I don’t attend the clinic with him. After his appointment Jason phoned me and said “I have to have another heart ultrasound in a month, there’s some changes to my heart.” I want to scream but I gently ask if he was able to get the print out of the ultrasound like I had suggested. He indicated that he forgot.

If you have read any of my blog posts you will already know that Jason had T-Cell Leukemia when he was 2 years old and received 30 months of chemotherapy and cranial radiation. He has grown up with late effects of cancer treatment including a brain injury which affects his memory and learning, he is sterile from chemotherapy and requires hormone replacement therapy. Jason’s life has been extremely challenging and there are days when he says he wished he didn’t have cancer as a child.

After hearing the news from Jason, but not getting enough of the details I went in to fight or flight mode. I wanted to speak to a Pediatric Oncologist and get a better understanding of what “changes to my heart” meant. I called the clinic and was not able to reach anyone. I sent several emails and was informed someone will call me at the end of the day. I was reminded that the clinic was busy and kids were sick.

Lovely, I thought to myself. I am a Registered Nurse who used to work on Pediatric Oncology, I am aware there are other sick children. So I sucked up the hit to my churning gut, and waited somewhat patiently for the phone call. (I hate phone calls to this day for this very reason, back in the chemo days the phone was always ringing with news I was not ready for.)

At around 4:00 p.m. the phone rang, the person on the phone explained that Jason’s ejection fraction is usually 60% and this week it is 45% and given the fact that he had a previous 45% result it was determined he should see a cardiologist. There was a brief discussion of the possibility of the chemotherapy drug Adriamycin causing cardiomyopathy years after the treatment was given. Jason was a toddler when he received his life time dose of Adriamycin. We talked about the treatment for cardiac myopathy and the phone call ended. I did remind the person that I had PTSD and was concerned about this change of echocardiogram results.

I was instantly brought back in time to another day when Jason’s echocardiogram results were abnormal. It was February 14, 1997, and the Pediatric Oncologist told me Jason’s ultrasound results were very poor, that he was in congestive heart failure and he would need a heart transplant. Those are words I will never forget, as they became the reason for me to write my book “Count It All Joy.”

I haven’t quite processed yesterdays news of possible heart damage. I am not quite sure who’s heart is broken mine, or Jason’s. Like we had to do 19 years ago in the month of February, we have to wait for the cardiologist to evaluate Jason. At this time I will hang on to hope that the result was an anomaly and when they check his heart at the department of cardiology they will tell Jason, your heart is functioning normally. Just like they said all those years ago.

Here’s the story from “Count It All Joy” – the experience that prompted me to write my book. If you find both stories confusing, well then I have been successful in sharing the roller-coaster ride our family has been on.

Monday, February 9th, 1998

The weekend has passed. I am glad it is Monday morning. Monday is a regular business day, and the day goes by at a quicker pace when I have places to go and people to see.

The dreaded Valentine’s Day is looming. Oh, yech! I keep trying to turn the reminders of pain and loneliness to happy thoughts.

Last year on Valentine’s Day, Jason had four medical appointments. An ultrasound of the heart at the hospital, a trip to the cancer clinic for his yearly check-up, back to the hospital to see the plastic surgeon about his burn scars, then across the street to the pediatrician to discuss hormone replacement therapy.

Jason and I are quite used to visits to the doctor, so four appointments in one day did not seem unusual. Tap, tap, tap, down the long corridor we walked to the pediatric cardiology clinic.

I said, “You go ahead, Jason. This is just a quick picture of your heart. You know the routine. I’ll just sit out here and read a magazine.”

“O.K. Mom! I hope the printer is working this time and I can take a picture of my heart to school,” he replied.

Click, click, click, down the street we walk to the cancer clinic. Another familiar outing for the two of us; we have followed this path from the hospital to the cancer clinic many times in the past ten years. The routine, twice-a-year check-up at the cancer clinic has always been a nice time to see old friends and catch up on news. During those visits the doctors had never had any frightening news about Jason’s health, not since that very first consultation on October 10, 1987. However, on this visit, on Valentine’s Day, 1997, I was told my son was showing signs of heart damage.

Oh, please don’t tell me that! This is the day I should get cards, chocolates and flowers from an admirer. I don’t want news of more tests, more doctors’ appointments or more information on the late side-effects of childhood cancer treatment. I don’t want to live in fear of my son’s heart failing and him dying before I am ready to say goodbye.

Oh, great. Now what? Should we go home so I can cry my eyes out? Or should we go and see the plastic surgeon and pediatrician as scheduled?

No, I am not ready to go home and accept this news. I want to be with people like doctors and nurses—comrades who can appreciate my fears. We will go to the appointments, and I will tell the friendly people there about the news of heart damage.

Jason did see the cardiologist and the repeat ultrasound showed his heart functioning normally. It was determined the February 14th result was an anomaly.

This week, on Friday, February 13, 1998, the day before Valentine’s Day, Jason is scheduled for an ultrasound of the heart and a check-up at the Cross Cancer Clinic. I haven’t scheduled any further doctors’ appointments. I am hoping the news is good. Then we can go for a bite to eat and buy some flowers.

 

Copyright 2016 Sheila Ethier