April 20, 2016, we received the news that every parent dreads. Our daughter Morgan was diagnosed with Ewing sarcoma. Up until that day, Morgan was your typical 12 year old girl, enjoying the final couple of months of Elementary School before moving up to High School in September.
Just a month before her diagnosis, Morgan was taking part in her Grade 7 class field trips, which saw her taking skiing lessons for the first time and loving every minute of it. One morning in early March, Morgan noticed a bump on her left clavicle as she got ready for school and showed it to her mother and I. We had no idea what it was, but we got her in to see her doctor right away to get it checked out. Her doctor diagnosed it as a dislocated clavicle based on what he could tell, but didn't want to take any chances so he ordered an X-Ray and an ultrasound. The X-Ray didn't tell us much, but the ultrasound seemed to show something. Now when I look back, I should have known something wasn't quite right with her bump as the ultrasound tech asked questions like "How long has it been this way?" and "Has it gotten bigger?" and he seemed genuinely uneasy about what he was looking at.
Fast forward to April 1st when BC Children's Hospital called to let me know that they had an opening to get Morgan in for a CT scan that afternoon. It seemed all to sudden, but I figured that this is how opening with imaging works and you take appointments when you can get them. So, I rushed home from work and picked Morgan up at from school during lunchtime to get her to her scan by afternoon. After the CT scan, we went to Orthopaedics and had an X-Ray done which didn't tell us too much. After the two scans, I spoke with the Orthopaedics nurse and asked what she thought it could be. I did not like the options I received; cyst, benign tumor or cancer. That is the moment things set in, the moment when cancer entered the realm of possibility. We always knew Morgan was too smart for her own good and over the course of that weekend she confided in her mom, asking if she had cancer. Why did this even enter her mind? Why does a seemingly healthy 12 year old think she could possibly have cancer? Why does she know that this stuff exists?
Over the next couple of weeks, Morgan endured a battery of tests that included an MRI, PET scan, chest CT scan, Echo, EKG and a biopsy, all in an effort to determine what we were dealing with and to ensure she was healthy enough to fight if she was diagnosed with cancer.
On April 20th, our lives changed forever. April 20th was the day that we found out what treating a child with cancer entails. April 20th was the day we found out that our plan for raising our two children was forced off course. April 20th was the day we found out that my wife could no longer stay home to raise our 2 year old son as she would need to refocus her attention to staying at the hospital with Morgan so I could continue to work to support our family. April 20th was the worst day of our lives.
Within a week, we managed to find an amazing daycare for our son which he started to attend and enjoyed; Morgan had two port surgeries as there were complications with the first one, and she started her first round of chemo on April 28th. The plan for Morgan was to undergo 6 rounds of chemo before having surgery to remove most of her left clavicle and the tumor with it and then another 8 rounds of chemo afterwards. Because of scheduling, she ended up doing 7 rounds of chemo both before and after her surgery. To help her with the surgical part of her treatment, we met with an exceptional thoracic surgeon an equally amazing plastic surgeon out of Vancouver General Hospital who were both willing to help Morgan.
August 4th - surgery day. This was the day that we looked forward to and dreaded at the same time. Morgan had been amazing and strong all the way through her treatment to this point but she was scared. Who could blame her? I was scared. Her mother was scared. As a 37 year old adult, I would be scared to undergo the same surgery, but she was only a 12-year-old girl! This stuff shouldn't happen to kids, right? At this point, there was no turning back and we all had to be strong to get through this together. The thoracic surgeon removed most of her left clavicle, part of her sternum and top rib which were closest to the tumor and part of the surrounding muscle. The plastic surgeon moved muscle from Morgan's back and attached to where her left clavicle had been to support other muscles and to fill the hole where her clavicle used to be. The surgeons where amazing as they did what they said they could do and her surgery was a success. After waiting an agonizing week, we found out from the pathology report that the tumor they removed was dead, the margins were good and that there was no cancerous tissue in the surrounding areas.
After taking a few weeks to recover post-surgery, Morgan continued with her chemo regimen. Just as the oncologists told us, Morgan's recovery from chemo was taking a long time since children who undergo intense chemo for so long encourages exhausted bone marrow and therefore it doesn't recover as quickly. Morgan never missed a day before her surgery, every second Thursday she started her next round of chemo like clockwork. After the surgery, her recovery from chemo continued to take longer and longer, but she got through it all. On December 3rd, Morgan was discharged from her final round of chemo to begin arguably the hardest part of this journey: Recovery.
It was fantastic that Morgan had the month of December to recover and enjoyed Christmas at home with her family. She started attending High School after the winter break in January and quickly got back into the swing of things. She finished Grade 8 with straight A's and was on the Honor Roll and Principal's List for the two terms of school she attended. 7 months post treatment, her hair has come back beautiful as ever and she starting to feel herself again. Although we know there is a chance of relapse, secondary cancers, future damage to her internal organs as a result of the chemotherapy she was given, we remain positive that we have seen the worst of this and that we can put this behind us and with every clear scan she completes it puts our minds slightly at ease.
Needless to say, Morgan was so strong, determined and an inspiration to us throughout her battle with Ewing sarcoma. She went through some very hard times that caused so much physical and emotional pain that most children and adults know nothing about. Her final year of Elementary School was cut short as she began treatment because we couldn't risk her going to school and getting sick. Before she started chemo, she had beautiful hair down to her shoulders that she loved, but just as the doctors had told us her hair started to fall out at about day 16 which is when we shaved her head. She missed out on so much time with her little brother and hearing him ask "Where's Morgan?" all the time and when he asked, "What happened to her hair?" the first time he saw her bald was gut-wrenching. I think the hardest question a parent could ever be faced with is being asked by their child "Am I going to die?" and not being able to, with full confidence, tell them no.
Morgan fell out of touch with most of her friends, which was hard to see happen to her. When her friends were starting High School, she remained home as we couldn't risk exposure to illness. She was supported by a roaming teacher who came to our house every two weeks to bring homework and help her with her studies.
Morgan has been left with a very noticeable scar where her left clavicle used to be and a large scar down most of her back where the muscle was removed. These are just some of the reminders we see day in and day out of what she had to go through to get to today.
Morgan's story has gone as well as could possibly be expected, but not everyone who is diagnosed with Ewing sarcoma is as fortunate. A cure needs to be found for Ewing sarcoma so that others don't need to suffer like Morgan and countless others have.