A PARENT’S PERSPECTIVE
My parents are both great and successful people who I love and admire with all my heart. They’re a helping hand when you need one, a smile when you’re sad, a teacher, a role model and a friend. My parents stay strong and hold my family together through times of trouble. So for my final blog series of how Childhood Cancer affects everyone, I give you my mom Donna’s perspective.
“What lies behind us and what lies before us are tiny matters compared to what lies within us.” Ralph Waldo Emerson
“As I walked alone down the hall of 4 North in CHEO, I stopped in front of a photo of Molly Penny, the CHEO therapy clown, and a little oncology patient walking hand in hand down the hospital corridor. This quote was written beneath it. I couldn’t sleep, I was in tears, I felt so alone and I wondered how on earth my daughter ended up here and where on earth I was going to find the strength to help her through this? Late at night, in this isolated hallway, with one of my precious daughters laying in a hospital bed, I knew that somewhere we as a family would have to summon the strength from within to help her, but I also came to the realization that a gargantuan amount strength and courage was going to have to come from somewhere inside an 11 year old kid.
Our daughter was an athletic gregarious fun loving girl always laughing and on the move, when she started to experience stomach pains and flu like symptoms we believed she had just contacted a winter flu. When these pains became excruciating we took her to Renfrew Victoria Hospital (RVH) where she was given pain medication until an ultrasound could be done in the morning. After the ultra sound she was rushed to CHEO by ambulance where we met a surgeon who thought she perhaps had an ovarian torsion (twisted ovary) which causes swelling of the ovary and pain in the abdomen. She was scheduled for roughly a one-hour laparoscopic surgery at 6pm that evening. As we sat in the waiting room, the 1 hour stretched into 3 and we were panicked. The “mass” around her ovary had been ruptured and the small surgery became a much larger ordeal for her.
The mass was sent away, and after a week stay at CHEO she got to come home, two weeks after that she was diagnosed with cancer. Her first treatment would start just before Christmas and she was scheduled to be home for Christmas Eve.
Our first reaction was shock, followed closely by disbelief, fear and grief. She was such an athletic, healthy kid; we couldn’t understand how this could happen to someone so young and active.
In my mind, I was hoping there was a mistake made in her blood work or lab results, I really struggled with facing the mortality of my child when every fiber of being a Mom is about protecting your children. Outwardly, you want to be calm for your child and strong for your family but inside is a different story. I wrote some poems during this time to help myself cope with the turmoil I felt on the inside. I struggled with my faith and I wanted desperately to take the shock, disease and pain away from her and put it on myself, but I realized that the lion’s share of this battle was going to be hers alone and that was hard to comprehend. It was a heavy load for an 11-year-old kid, she was thrown into a world of adult terminology and decisions as well as medical tests, procedures and many needles, reports and machines.
We lost the luxury of that carefree feeling of everything being alright with our kids. She was going to be missing school and I was going to have to leave work. She would have to deal with losing her hair and contending with a type of chemo known for causing terrible nausea. We quickly became knowledgeable about medical terminology, medications and protocols. I would go into what I later referred to as “CHEO” mode, monitoring visitors, sterilizing our home when she was neutropenic, and scheduling treatments and appointments. We became more tightly knit and we switched off Mom and Dad at the hospital to be with our other two children and keep things somewhat “normal” at home for them. Our other two daughters focused on their sister and what they could do to help her through each round of chemo and then radiation. The time in treatment can be isolating. We always planned things in the future to look forward to, it seemed to lift her spirits and drive her recovery. The Candlelighters were a huge part of this. They gave us events to look forward to and Jill was given a laptop to use during treatments so she could stay connected with her friends which was so very important to her recovery.
Six months after her original treatments, routine blood work at RVH showed elevated tumour markers and our daughter was given the news that she had a relapse tumour. After being named top athlete at the local track meet and taking part in RCI’s relay for life that week, she was now facing 2 more surgeries, 5 more rounds of aggressive chemo and radiation. You think hearing that initial diagnosis is the worst news you can get, but relapse was worse, because this time she knew what lay ahead.
This blog series is about perspectives and as a Mom and a teacher, I’d like to share some of the extraordinary things that I saw happen next, from my perspective.
After the relapse news, Jill again had to leave school and enter treatment. As any “frequent flyer” at CHEO will tell you, this means missing many social events and milestones. Many holidays, birthdays and celebration times are spent isolated in the hospital. Not being able to just hang out with your friends when you want to is a huge loss.
I think one of the most amazing things I saw at this time was the resiliency, strength and acceptance from Jill’s sisters and friends.
During this time, from day one, I saw Jill’s younger sister Kathleen become somebody who could make Jill laugh and who was always ready to go outside and make forts or play games when Jill felt up to it. She became a Wii challenger, a cartoon watching buddy and a messenger for Jill between home and school. I found that much of her focus was on making Jill smile or get her active.
Jill’s older sister Jenna shouldered more responsibility at home. She became more of a girls’ night organizer and popcorn maker. I feel that she spent more time trying to make evenings at home fun for her sisters and she also changed plans and was willing to go places and do things at anytime so Jill was not so isolated. I feel much of her focus was on keeping things easier and positive for Jill and our family.
They seemed to take changes in stride and even though they were worried, they tried to make things as positive as possible. The trio of sisters were dancing, singing raucous kids when they could be, and quiet, snuggle up with a movie companions when that was needed too. They seemed to just sense what was needed at any given stage of recovery.
As a Mom and a teacher, I worried about how this news was going to affect Jill’s friends. A diagnosis like this is a big intrusion into a childhood world of carefree laughter and fun. I was concerned about how they would handle this news and struggle to make sense of it all. The busy days at the end of the school year, before Jill’s hospitalization, were going to be action packed and fun but Jill was going to share some pretty intense news with them. How would they feel when they got home at night and snuggled into bed? Would they be afraid? Would it be too much to handle? Every one of the parents of Jill’s friends I spoke to, were all helping their child cope but were very concerned about what they could do for Jill. They all supported Jill’s decision to talk to her friends at school and tell them what was happening.
Jill’s friends at school were very supportive and accepting. They sent her notes, videos and pictures. The biggest thing I noticed about the kids is that they left the illness behind and sent funny ridiculous things that showed just kids being kids. They didn’t change who they were. A huge part of transitioning back to school was that Jill’s friends accepted her right back into normal school routines. Sometimes kids who are away from their peers for an extended period of time can be isolated when they return. This didn’t happen with Jill’s friends or her teachers. When she returned, she was welcomed and very quickly bounced back into being a regular student. The kids seemed to roll with things sometimes better than adults.
With Jill’s family friends, I noticed their ability to change plans when needed. I found it amazing how they were so willing to celebrate her February birthday in July, have Halloween early, stay home and have a New Years Eve pajama party or make snow forts outside in sub zero temperatures just to be together. I found that each friend had a gift they shared with Jill to help with her recovery. Some where artists, some communicators, others were clowns and motivators. They all stayed positive for Jill and followed her lead. Amazing!
I have seen my 11 year old fun loving, intelligent, beautiful daughter vaulted into a hurricane of severe change. I’ve seen her go through highs and lows that still seem unimaginable. I’ve watched the typical teenage bumps, bruises and disappointments help her develop into a fun loving, intelligent, beautiful 18 year old who doesn’t allow the past to define her, and who continues to overcome the struggles associated with recovery and moving forward. Did she do it alone? Absolutely not. She was, and continues to be surrounded by loving sisters and extraordinary friends. However, somewhere inside there lies an incredible spirit that embodies resiliency and strength, she is an incredible woman, from my perspective.”
Donna, A Proud Mom!
Seeing my Mom’s words in print was heartbreaking and inspiring. During Jill’s journey, I very seldom ever saw my Mom’s reserve break. She was always strong, positive and in control. I hope her words have moved you as much as they have moved me!