Johanna’s Story: A little girl with a big story

By Shari Reinhart

a2z parents had the privilege of meeting a brave and beautiful young lady. Her name is Johanna Wellige and at six years old she was diagnosed with a rare form of cancer, rhabdomyosarcoma. Her mother, Lesley Erin Banks, a dynamo wrapped in a tight little package of positive energy is juggling the blessings of life which, on July 10th, 2009 included an uninvited addition to the family, cancer. Johanna’s brother, William quite literally feels her pain at times with “pains” of his own, and her father Rainer, sees only strength in his daughter and the bright future that awaits her.”

This is Johanna’s story.

a2zparents: Tell us how your journey began.

Johanna’s mom: In grade one less than a year ago we saw that Johanna’s right eye was drooping. She never complained about it because it caused her no pain. Kids at school began to notice and ask, “Hey, what’s up with your eye?” Instead of getting better, it was worsening so we took her to the ophthalmologist on April 17th  2009 and he said, “I think it’s muscular, nothing to worry about, we’ll see you again in October.” There was no improvement. Concerned, we went to our pediatrician rather than wait until October. She immediately sent Johanna for a CT scan.

a2zparents: What was that like for you?

Johanna: Well, it looks like a donut. They gave me an I.V. and told me not to move. I remember wondering “Why are they putting this in my arm when the problem is in my eye?” I had to stay there for 10 minutes. I didn’t like the CT but then they sent me for an MRI and I really didn’t like that. It was loud in my head and it was 45 minutes long and my mom couldn’t reach my hand to hold it like she could for the CT scan. She held my feet instead.

a2zparents: On July 10th Johanna went for her first surgery. Can you tell us about that day?

Johanna’s mom: Johanna didn’t want it. The surgery was 3 hours long. It wasn’t supposed to be so needless to say, after the 2nd hour we were quite agitated. Pathology examined a piece of the tumour and by the time Johanna awoke returned with the news. When spoken to you about your young child, the words “it’s cancer” are the most surreal you could ever have to digest. The shock is indescribable. But then, you just move into action. The week immediately following Johanna’s surgery was a whirlwind of appointments. They went for a series of tests which were scheduled at several different hospitals (because not all hospitals have all the machines) and after a week of this, Johanna underwent a second surgery. On July 20th Johanna began her first chemotherapy treatment.

a2zparents: Johanna, would you mind telling us what chemotherapy is like for you?

Johanna: I had 31 chemotherapy treatments and almost as many radiation treatments so far. I went to The Montreal General Hospital every morning for 25 mornings for radiation and the Montreal Children’s Hospital every Wednesday for chemo. I had to miss school from the end of October until Friday November 29. Every 3 weeks I have to get a big treatment and that one makes me sick for four days. My chemo treatments end on June 23.

a2zparents: Are you still in school?

Johanna: Oh yes! I go to school on Mondays and Tuesdays, I get my treatment on Wednesdays and my mom home schools me so I don’t miss anything. My mom’s a teacher so it works out.

a2zparents: You must be a good student.

Johanna: I’m an excellent student. My favourite subject is science and I want to be a teacher one day.

a2zparents: Johanna and Lesley, thank you for opening your hearts and home to us.

Lesley Erin Banks
I would remind parents to look at WHO they have, rather than WHAT they have. We are not mothers and fathers without our children. They’re the little people who teach us about the BIG stuff. When you can find it in yourself to accept what you have been handed, it’s easier to enjoy the moment than imagine what could have been. Life’s worth so much more than before.