Florie's Wilms' tumour story - kidney cancer

The symptoms

It was the 23 March 2020, the day the Prime Minister, Boris Johnson put the country into lockdown. Our two-year-old daughter had been rather miserable for a few weeks, not sleeping at all well, crying in pain at night and off her food. To which we thought it was just a bug. She also had a strange swelling which had appeared on her right side of her abdomen in just two weeks. We took her to our doctor for a check-up. The doctor took one look at the strange new bulge on our daughter’s side and told me that this was terrible timing, and she would need immediate surgery.

The devastating news we didn’t want to hear

I thought it might be some sort of intestinal blockage but never could have guessed what was ahead. We were sent straight to A&E for tests. After a long wait, two kind doctors came into our room looking serious and pained. They told me that our perfect, beautiful Florie had cancer, probably a Wilm’s tumour or kidney cancer. I felt numb. I couldn’t process what they’d told me. I was alone with my daughter as COVID-19 restrictions had just begun and only one parent was allowed. I had to tell my husband her diagnosis by text. We were referred to a consultant at a hospital in Sutton and so the nightmare began, during the first lockdown.

She lost her appetite and was fed through a nasogastric tube

We spent a month at the hospital undergoing more tests and beginning the first seven chemotherapy treatments to shrink her tumour. We were told Florie’s cancer was Stage 4 and she had two metastases in her lungs. She had her first operation to fit a portacath in her chest. We spent our first four hospital nights isolated in our room due to COVID-19 restrictions, which was a new and difficult experience for us. As the chemotherapy intensified, Florie’s beautiful red curls began to fall out, she vomited constantly, she howled in pain as her large tumour squashed the surrounding organs. She was chronically constipated from the morphine. She lost her appetite and was fed through a nasogastric tube. We had to hold her down repeatedly to endure unpleasant but vital procedures. My husband and I did 48 hour shifts to be by her side and also care for our other daughter at home.

The day of the surgery to remove the tumour

Finally, the day came for Florie’s tumour and right kidney to be removed at our local hospital. The amazing surgeon and his team removed her right kidney and 80% of the tumour. Florie spent 24 hours in Paediatric Intensive Care Unit, under the diligent care of medical experts. Florie’s left lung collapsed on the first night, but the brilliant doctors intervened. She was strapped up to what seemed like hundreds of pumps, computer screens and wires but the attentive nurses were always on hand to reassure us. Once the kidney and tumour had been removed, we felt elated, thinking we had beaten the cancer. Instead, we were told the cancer was very aggressive and would need further intensive treatment of 27 more chemotherapy rounds and three weeks of radiotherapy.

There are so many people we would like to thank

I will never forget the extraordinary doctors who made swift decisions and saved her life many times. There are so many people we would like to thank from the nurses in both our hospitals who distracted Florie when she had to have yet another painful needle in her little toddler hands or chest, who hugged me when I was sobbing and brought me sweet tea. The amazing Play Teams were always on hand with treats, toys and fun activities to distract from the pain and help pass the time. The wonderful Community Nurses who are such a daily lifeline at home with a poorly child and the Psych team who supported me through the ordeal. The amazing cancer warrior mums I met on the wards and on social media who were such a lifeline. Florie spent many weeks on the wards receiving endless medication, x-rays, scans, blood transfusions, tests, further operations, and daily expert care. Both hospitals always patched us up.

We are obviously beyond grateful that she has survived

Our time on the wards has lessened considerably now as my daughter continues to make a good recovery, with a year of clear scans so far. We have heart stopping scans every three months to make sure there are no relapses. We never take it for granted as I have heard so many stories when it has come back. Florie has been at nursery since April 2021. She started with no hair and now has a thick mass of auburn curls. She has progressed so much apart from three scars on her side, you would never know anything had happened. She still struggles with eating and requests rather strange things to eat, left over from her chemotherapy days. She continues to wake up every night at the same times that she was woken for observations in hospital. We are obviously beyond grateful that she has survived the ordeal but live in fear that it will come back. We are also terrified that any of the side effects from the strong drugs might have damaged Florie’s hearing, her heart, her bones and so much more.

Florie rang the end of treatment bell on 25 March 2021 at home because of COVID-19 restrictions.

Update: January 2023

Florie has enjoyed a lovely Christmas and New Year in the Highlands with her family and 91 year old grandpa.