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