Radiothon: A mother’s journey to save her daughter

Prior to November 21st our family lived like any other hockey family lived, we were in and out of arenas with both our children from August to March. Our lives came to an abrupt halt on that Monday, November 21, 2016. It has become the day my husband and I will never forget. At 10 AM our 9 year old daughter came in to the Children’s for an x-ray to determine if she had pneumonia and by 7 PM we found out that there was a 99% chance she had a malignant tumour growing somewhere in her chest. That day was the beginning of our nightmare, a nightmare that as I am writing this article (we are currently in the month of May) is still ongoing.

For the remainder of the week of November 21, she endured many tests to determine the type and extent of her cancer.  She was a trooper and the fact that we encountered an amazing Child Life Specialist on the surgical floor helped make the process go smoother. On Wednesday, November 30, we learnt that our daughter has Ewing Sarcoma (a soft tissue tumour) growing out of her 5th right rib. We were told that she would require months of chemotherapy and surgery with the potential for radiation. That day we were given her chemo protocol, explained all the side effects for each of her 5 chemos and given a general description of what we could expect throughout the months ahead. Her Oncologist, Dr. Mitchell, and the fellow resident, Dr. Charlebois, sat with us and answered all our questions and listened to all of our concerns.  Once we learnt everything we needed to know, it was time to bring our daughter into the room to explain what was happening to her and what would happen to her in the months to come. My husband and I were beyond amazed with the way they explained the horrific news to our daughter. The patience they demonstrated by answering all her and our questions reassured us that they were the right doctors to treat our daughter.

There is nothing that can really prepare a parent as they prepare their child for their first chemotherapy treatment. There is also nothing a parent can do to really prepare themselves for what’s about to happen to their child.  There are no words to describe the anxiety a parent feels as they drive their child to the hospital to face the poison that will be dripped into their body and its resulting side effects.

With heavy hearts and knots in our stomachs, we drove to the hospital on an early Friday morning. The day began with a surgical procedure to insert a port under her skin which would be used to deliver the chemotherapy. The procedure went well and without incident. Once over, we were brought to the Hematology-Oncology day clinic where we met our case nurse who gave us a cancer package and important information we would need once home. Soon after, her first round of chemo started. The whole process was extremely well organized and the care and warmth with which the information was transferred assisted in keeping our panic at bay.

Total shut down

Unfortunately for our daughter, she started feeling quite sick once we returned home Saturday morning.  Not only did she feel ill, she stopped talking, eating and drinking – in reality she was shutting down.  By Monday morning she was no longer able to walk and so we went to the hospital where they immediately saw that something was wrong. A blood test and triage showed that she was dehydrated and had lost a significant amount of weight. A nutritionist was brought in who carefully explained all our options. In the end, the decision was to insert a feeding tube through her nose so that we would be able to supplement the nutrients she was missing. Our poor daughter, not only did she just start chemo she now had to go through the extremely uncomfortable process of putting a feeding tube through her nose for the first time. Once again the nurses in the day clinic were amazing and helped us through this new and stressful procedure. We were also told that we would be admitted so that I could be taught how to use the feeding tube machine and to help her recover from her dehydration.  This was our first time really getting to know how things worked on Sarah’s floor, to meet more nurses and see what the hospital has to offer children who are admitted to the hospital. Our daughter was still not talking and it was heartbreaking to watch.  Tuesday morning arrived and the new day brought the Dr. Clowns. For the first time in days, the Dr. Clowns not only got our daughter to talk again but got her to laugh as well. As the week continued, it brought with it more surprises; pet therapy, child life specialist, amazing volunteers and fabulous nurses.

Down to her level

Over the following weeks, her chemotherapy cycles continued until it was time for her surgery. We met her surgical team and were amazed at how they took the time to answer her questions and come down to her level. It amazed my husband and I that these, mostly adult male, doctors would sit and have casual conversations with our daughter and laugh with her. The patience they displayed was beyond amazing.  Their surgical planning exceeded my expectations, they thought about her as a little girl who will eventually go through adolescence with all the insecurities that brings and planned the surgery and incision accordingly. They even brought in a plastic surgeon to close the incision. Finally, they accommodated our daughter’s repeated request, to see pictures of her surgery and tumour. Once the surgery was over we spent 6 days on the surgical floor. The care we received from the nurses, pain specialists, surgeons, anesthesiologists, physiotherapists and child life specialist was second to none.

Two weeks post-surgery, chemotherapy resumed and radiation began. Undergoing chemotherapy and radiation brought with it challenges we were not expecting, low blood count levels and delays in chemotherapy. While it was difficult to get through the daily hospital visits for 5.5 weeks, the doctors, nurses and technicians did whatever they could to help make our daughter feel more comfortable and make the situation as easy as possible.

As I write this story, we still have 14 weeks of chemo ahead of us. Even with the 14 weeks ahead of us we are looking forward to riding bikes this summer and enjoying life as much as possible as we prepare to go back to school in the fall. Looking back and reflecting on the past few months, the one thing that strikes us the most is how much we have learnt and how much we have come to appreciate the amazing professionals we come into contact with every day. Our family has grown to include the most amazing Hematology-Oncology and Surgical team (doctors and nurses), extraordinary administrative, support and housekeeping team, fabulous nutritionists, incredible physiotherapists, remarkable child life specialists, superb volunteers and excellent Dr. Clowns! Without this phenomenal team, our nightmare would not have been bearable. Without this team, our daughter may not have smiled again after that first weekend. 

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