In 2014, both my husband and I were working long hours at high pressure jobs. It seemed as though our daughter Selena was spending more time with her nanny and grandparents than with us, and she was having behavioural problems at daycare. We made the decision that Selena needed more “mom time,” so I took a leave of absence from my job in women’s nursing apparel and I started working part-time at a restaurant. It paid off: Selena’s behaviour changed 180 degrees in that first year. She was happy and well-adjusted, and I got the opportunity to really know my kid in a way I hadn’t before.
So when our healthy child who never had so much as a cold said, “Mummy, I have a tummy ache,” we didn’t just blow it off like we might have the year before. We immediately took her to a walk-in clinic. The doctor pressed down on her stomach and noticed her liver was swollen. Although he attributed it to an infection, he was still curious so he made a requisition for an ultrasound. And for that, I will forever be grateful.
Selena’s stomach ache went away and she didn’t have a single symptom after that. If not for that ultrasound, they would never have detected a mass or ordered the blood work and CT scan that determined it was cancer. Selena was diagnosed with the worst type of Wilm’s tumour; we were told to get ready for a bumpy road.
Her protocol was experimental and based on yet-unpublished research out of the United States.
Step 1 – Removal of her kidney and tumour
Step 2 – 13 rounds of radiation
Step 3 – 12 cycles of aggressive chemotherapy
Selena’s treatment completely wiped out her bone marrow and she was in semi-isolation for nine months. It was challenging. She couldn’t go to daycare, birthday parties or even the shopping centre. We decided to make home the best possible environment we could and we celebrated everything, from a single poke to the end of a round of chemo. We had a party every weekend with cake and lots of family (screened for even the slightest cold symptom) and the days were joyous and filled with laughter.
This last year was challenging in other ways. I quit my part-time job and managed all of Selena’s medical care. I had already taken a serious pay cut to be home and now I had zero pay, no employment insurance or benefits, and our expenses were rising. My husband worked extra odd jobs so we could get by and our Interlink Nurse* from the Pediatric Oncology Group of Ontario connected us to every resource we were eligible for, including their Financial Assistance Program.
And now Selena’s treatment is over and she is doing so well. She is excited to start school; I am thankful that I get to return to the same job after being away for two years; and my husband and I are determined to get back on track financially. It will be hard to return to “business as usual.” You get attached to the reality you are in. There is so much readjustment after cancer, but we are looking forward to this next stage in our lives.
– Natasha Koss
WATCH SELENA’S STORY: Creating a Happy Home When Your Child has Cancer @ www.pogo.ca/programs-support/inspiring-stories/
*POGO Interlink Nurses play an important role between hospital visits. They provide excellent nursing support to the family and they work with schools to help them understand the needs of the young cancer patient.