The next segment of my BE THE GOLD Childhood cancer awareness series addresses the childhood cancer impact on the parent and family of the child diagnosed. It was heart wrenching to read the honest and heartfelt answers to my questions from two moms who have had this shattering experience. Both of these amazing ladies have become very close friends of mine and are ladies that I respect and admire.
The second installment of my BE THE GOLD – A Parent’s Perspective comes from a mom with a daughter diagnosed with a GERM CELL tumour.
QUESTION: What age was your child when they were diagnosed?
My daughter was 11 when she was diagnosed with a germ cell tumour on her ovary.
QUESTION: What was your gut reaction to the diagnosis?
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.
QUESTION: Can you give some insight (if you are ok with sharing) into what went through your mind?
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.
QUESTION: How has your child’s diagnosis changed your family life?
The diagnosis changed our lives because the safe feeling of having everyone healthy and carefree was gone. 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 more information than you’d ever want to learn. 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. It’s a trend we still seem to embrace; we always seem to be doing something.
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.
QUESTION: I have been in the Oncology unit of the children’s hospital but it must be surreal to actually stay there. Is it as overwhelming as it seems to an outsider?
I’m going to step outside your oncology floor question and include the MDU (medical day unit). The first day we walked into the MDU, I was expecting a sad place with sick children in it. What we found was quite the opposite. It was noisy, colourful, friendly and small kids were whipping up and down the hall playing and dragging their IV poles behind them. Little kids were just acting like little kids. I wasn’t expecting that at all. To answer your question about the oncology floor, it is overwhelming every time you walk through the doors to 4North but the staff is so friendly, positive and is there for you always. There are families at various stages of the treatment process and children who are quite ill from treatment or in a couple cases we roomed with little ones who were overcome by hyperactivity because of it. We have some interesting roommate stories from CHEO! We had a routine when we got to 4 North, we made the bed with a beautiful quilt given to us by Victoria’s Quilts, then a soft flannel pillowcase made by a church group in Portland called Cases of Caring, next, was a favourite stuffed animal and our room was less hospital. I was extremely grateful that CHEO has fold down chairs for parents to sleep in and I didn’t have to leave her at night. Even though our daughter was not able to use the playroom or teen room during her treatments, the Childcare workers always dropped by to say hello and that meant the world to me as we were isolated during this time.
QUESTION: What are some of the experiences you would like to share with others to make them aware of what your child and others diagnosed go through?
To help others become more aware of what families go through, I think it’s important for oncology families to share their stories. You may not realize that family holidays, birthdays, Christmas, Hallowe’en etc. are spent by many families in the hospital. It’s important for young people like you and the Miss Teen Ontario East organization to get information out to others on social media and through your volunteer efforts. To make one more aware, the greatest teacher is to help others, volunteer and reach out in your own community.
QUESTION: Childhood cancer Awareness is my national Charity Platform, is there a message you would like to deliver to others to increase awareness?
To increase awareness at the national level, I would like our governing officials to know that there is still much work to be done. We have wonderful facilities and brilliant, dedicated, caring staff but nursing cut backs and less funding given to research and therapy is holding us back. Many families and children can be financially and emotionally crippled by this disease. We need a way to financially help families who have one or both parents unable to work. More attention is needed to long term after care and life path choices when a child has latent side effects that take away their independence into adulthood. After effects are a part of diagnosis as well.
QUESTION: Finally, what have you learned from your child having gone through this diagnosis and subsequent treatment?
What I’ve learned from our cancer journey is to try to cross a bridge when you get there.
We have a caring, strong community of friends surrounding us. We live far apart geographically but we are close by when it counts. My kids have incredible friends, and our family can lean on each other when you think you have no strength left. The most significant thing that I have learned is how incredibly strong, resilient and positive my daughter is. We have seen her knocked down so low, you wonder where she would find the strength to get back up, but she did, every time and she looked for the positives. At night when I walked through the halls of CHEO’s oncology unit, I would see a photograph of Molly Penny (the CHEO therapy clown) holding hands with a little patient headed down the hallway and the quote by Ralph Waldo Emerson beneath it read, “What lies behind us and what lies before us are tiny matters compared to what lies within us.” I think that is a perfect summation of her strength and courage, she is an extraordinary young woman.
Thank you so much for sharing your story with me and my readers.
Keep tuned in for my next BE THE GOLD Childhood Cancer Awareness Blog series featuring the medical professional’s perspective.