Ethan's Story

When I was pregnant with my youngest son, Ethan, I wondered about his future, as I’m sure all parents do.  I would laugh thinking about all the trouble he’d get into as a little kid and looked forward to seeing what kind of man he’d grow up to be.  Some days I’d freak myself out by imagining all the potentially horrible things that could happen in his life.  Would he ever break his leg?  Would he get into trouble in school?  Would he put a dent in the car?  Of all the things that ran through my head, hearing the words, “I’m sorry, but your son has a malignant tumour”, didn’t even occupy even the smallest part of my thoughts. He was just 3 years old.

After going home later that day, we were in shock, dazed, confused, and scared. The hardest part was telling our son Skyler his little brother had cancer.  A few days later we found out that Ethan had Stage 2 Neuroblastoma.   They told us it was highly curable and that they were confident they would have no problems curing him.  A fairly simple roadmap of chemotherapy was laid out before us and we felt a little better.  A couple of weeks later, after many tests and scans, our doctor called and told us that it was worse than they thought, and it was actually Stage 4 Neuroblastoma...rare, high risk, and not that curable at all.

Though a lot of those first few weeks are a blur, I remember them clearly saying “We treat each child assuming we are going to cure them”.  In some ways that made me feel good because I knew they were going to do everything in their power for my son.  On the other hand, that word “assuming” stuck out in my mind. I sat down, stuck my head between my knees and stopped breathing for while.  My husband leaned over and said to me...”Stephanie, cancer picked the wrong damn family to mess with”.  I lifted my head, and our battle began.

We were told that Ethan’s treatment would be intensive. He had five rounds of chemotherapy, followed by another two rounds after finding more cancer in his bone marrow.  After all of this treatment, he received two stem cell transplants and six months on a drug called Accutane.  Now, I know this all sounds fairly simple and straight forward, but those simple sounding “seven rounds, two transplants and six months of meds” took a year and a half to complete. The first eight months were spent almost completely living in the hospital.  It was a very difficult time for our family and friends.  I had to leave my job, leave my life and concentrate solely on trying to save Ethan’s life.  My husband continued to work.  He had to hold down the fort at home and try to maintain some sort of normalcy with our teenage son.  Cancer is really a family disease and in a strange way – we all had it.  Ethan had quite a difficult time with chemotherapy and many side effects kept him in hospital, long after he would normally have been able to go home.  I remember one time I didn’t even set a foot outside the front doors for 42 days.  It was even longer for Ethan.  I divided my time between trying to make Ethan comfortable, trying to persuade him to eat, and praying.  But even today, I’m amazed at how such a horrific experience has taught me such positive lessons.

One of the biggest lessons I had to learn was trust.  Handing the life of your child over to people you don’t even know is almost impossible.  You have to trust your instincts and pray that you are doing the right thing. 

I also had to trust my older son take care of himself, because I just wasn’t there.  He did an amazing job and I admire him so much for being so understanding and supportive.  I’ll never forget being on Radio-thon last year at the hospital and one of the DJ’s asked Skyler how it felt for him....and his only answer was...lonely.  It broke my heart to realize how much he did need us, but hid it from us because he knew what we needed to concentrate on.

I’ve learned to not put off things that I want to do.  We really do live every day with purpose.  We try not to “sweat the small stuff” and concentrate on the things that really do matter.  I tell my family that I love them every day.  I am full of hope, not just for us, but for everyone I’ve met during this journey and everyone I continue to meet.

But even now, every day is still a test.  Childhood cancer is a lifelong journey.  Chemotherapy leaves behind damage that cannot be fixed.  In Ethan’s case, he lost a lot of his hearing and now wears hearing aids, as well as some psychological and emotional effects as a result of treatment.

I have heard over and over again people say how some people handle cancer and treatment with grace and dignity, and I have to tell you, there was nothing graceful or dignified in the way Ethan battled cancer.  He met it straight on every day and fought it for all he was worth.  He likes to say that he kicked cancer right in the butt.  There’s a dark place in my head that I try to ignore that always wonders if Ethan will get sick again, but I just have to push thoughts like that aside and move on.  Ethan is doing well, and that’s what we have to concentrate on. 

When you have a child with cancer, hope is what you cling to and what you fall back on when things are at their worst.  You don't realize until later that a parent shouldn't have to rely on hope to keep their child alive.

Research is such an ambiguous term and it often gets glossed over.  Ethan has participated in research by being on clinical trials.  One trial that he participated in has had amazing results and shows great promise for kids with Neuroblastoma.  Because of this, Ethan will be going back into treatment for six more months.  We are sad to have to disrupt our newly "normal" life again, but because of the research done at the Alberta Children’s Hospital with the help of community support, he's been given that much more of a fighting chance.  This research isn't ambiguous to us, but a direct result of the work of the doctors and researchers right in our own community.

I am tremendously thankful for so many people who helped save our son and who continue to treat him.  I am thankful to the people at Alberta Children's Hospital for their expertise – the people who open up their hearts and arms to help these children and their families every day.  I am thankful for our friends and family who gave so freely of themselves to help get us through the worst time of our lives.  But most of all I am grateful to every family whose child has gone through Neuroblastoma before Ethan…and to every child that died.  It is tragic that people have to get sick in order for us to find answers and cures…and to every child and family who’s been down this path before us…we are truly grateful and we want them to know that their sacrifice was not in vain.

Stephanie, grateful mom