Madeleine's Germ Cell Tumour Story

The start of symptoms 

In November 2019, our little girl Madeleine, the youngest of 4 siblings, turned 4. She was a keen and active gymnast but became increasingly reluctant to put on her leotard or to go into splits. After several months of complaining of pain in her bottom and three trips to the GP surgery, her bouts of night-time screaming were put down to night terrors.

The diagnosis

Madeleine had fallen off her bike in July and we thought bruising potentially indicated a fracture in her coccyx area. Her symptoms persisted and we took her to the urgent care GP, at which point she was referred to the children’s assessment unit the following day and sent for an ultrasound. Suddenly and unexpectedly our lives fell apart when we saw a grapefruit sized mass in her coccyx. Nothing could prepare us for the fear, sadness and grief when four days later, after an MRI and CT scan, she was officially diagnosed with a stage 4 germ cell tumour, the cancer having spread to her lungs. Being sent to the oncology ward was terrifying – we had never known anyone in our family with cancer, let alone a child.

Starting treatment

She was referred to an oncologist, and it was decided she would have 6 cycles of chemotherapy on the JEB protocol (carboplatin, bleomycin and etoposide) to hit the cancer hard and prevent risk of relapse. Signing the consent forms was particularly upsetting – I remember vividly reading the risk of infection and not being able to comprehend that the treatment could ultimately lead to fatal complications. There was no question we would consent though to give her the best chance of a favourable outcome. Madeleine had a general anaesthetic, and a central line fitted in a hospital about an hour away from home.

She started to lose her hair

Fortunately, treatment took place at our local hospital, starting 10 December. We managed to have the best Christmas we could in the circumstances, not knowing if it would be her last, taking in experiences such as the Santa express. Madeleine started to lose her hair on Boxing Day, clumps falling out. I had something of a breakdown at this point as I didn’t know if her treatment was working. In January, we learned her AFP blood markers (alfa feta protein), had reduced from 100,000 to 33,000, a discernible difference, with the optimal goal of being under 5. Steadily, after further rounds of chemo, these numbers fell even further.

An all-consuming obsession, worrying

But then we had a further hurdle at this point to contend with – Covid. I’d started to hear of the Covid 19 infection in the new year, and it became an all-consuming obsession, worrying about risk of infection when Madeleine’s neutrophils were nil due to chemotherapy. We took every precaution and isolated for 4 months as a family, not even having our daily exercise for fear of contracting the virus and spreading it to Madeleine. Treatment was even moved to the local hospice due to pressure on beds at the hospital.

Chemotherapy continues

Chemotherapy continued successfully and despite a couple of blood transfusions and hospital stays due to spiked temperatures, eventually ended on April 6th, her AFP now around 5. Surgery was scheduled in Birmingham for May 27th, her brother’s 16th birthday, to remove the residual mass. We had been so looking forward to a small modicum of normality and we once again had to alter our plans, such is the life of an oncology family.

Surgery was a great success

Despite not being able to both join her during surgery and recovery, and having to tag team due covid restrictions, surgery was a great success and the tumour was found to be necrotic. She started school in the September after surgery, rocking her newly growing cropped hair. Madeleine has continued her recovery in the years since, with weekly, then monthly bloods and reviews. We now see her oncology team twice a year.

Madeleine’s commitment to gymnastics

After continuing to train throughout treatment, mainly remotely via online sessions, Madeleine still loves her gymnastics, and last year took up figure skating too. She trains 10 hours in gymnastics and has aspirations of becoming a professional, especially after watching this year’s Olympics in Paris. In May, she placed fourth in the entire West Midlands for 9 and under, and an astounding third on floor. We truly believe that the commitment she showed to continuing her gymnastics training during and after treatment, helped prevent her from additional interventions such as an NG tube to support weight loss.

Looking to the future 

Madeleine is truly an inspiration. She also enjoys music, plays piano and is looking forward to singing with the children with cancer choir for the second successive year this November. The longer-term effects on the family are wide reaching – I live with PTSD and anxiety, and the diagnosis has had impacts on all of Madeleine’s siblings. I try and focus by advocating for oncology families and doing charitable work to make a difference. Whilst childhood cancer is never a gift, it has taught us to be grateful every day and thankful that Madeleine is here to enjoy the things she loves like any 8 year old should.

Emma, Madeleine’s mum, August 2024

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