Why we need your help
A fund set up in the loving memory of our beloved daughter, Sophie Charlotte Francis.
Sophie was 5 months and 3 days old when we took her to a consultant paediatrician to get her slightly large tummy checked out. Thinking our otherwise very healthy and happy baby was perhaps eating too much or just bigger than average, or at very worse a “protruding spine” as suggested by the GP. The words “I think it’s cancer” were the last ones we expected to hear. Unimaginable. Even now.
From then followed immediate admission to Great Ormond Street Hospital and an intense week of; general anaesthetic, scans, biopsies, tests and every emotion from hope, fear, optimism and devastation when we heard the confirmation of Sophie’s malignant rhabdoid tumour of the liver with metastasis, a very rare and aggressive cancer, and a slim chance of survival. She immediately started her first cycle of chemotherapy. She was due to have 10 cycles, but after the 6th and a review MRI scan revealing there were more tumours, the decision was made to stop the treatment and pursue a palliative care path.
In the interim we were desperately searching for trial drugs or alternative options to no avail. The fact she was less than 6 months old was against us as many trials wouldn’t allow participants less than 12 months.
It was at this point we were struck again at just how limited the options for treating such a rare cancer are. Due to the rarity there is very little research undertaken, so treatments used are generally for other cancers. And as with most children’s cancer treatments, they are often chemotherapy treatments developed for adults, not taking in to account the vulnerability of children’s bodies and the need for more targeted approaches.
We remember vividly having to ignore all the potential life limiting side effects when signing the consent form for her treatment, hoping she would forgive us if she made it through, as the drugs being used potentially had such strong implications on her body.
The decision to stop Sophie’s treatment was taken in mid September. And by the beginning of October, with a spike in temperature and difficulty in breathing, we were admitted into our local hospital for the familiar routine of observations and care. Neither of us believed this admission would be for the last time and that we would end up leaving that hospital without our precious little girl. We still can’t believe it. Sophie died in hospital, in our arms on 9th October 2017, aged 7.5 months.
Since Sophie left us, she has sent us some gifts in the form of siblings to keep us on our toes! She now has identical twin brothers, Harry & Louis (born in August 2018), and more recently (January 2020) we welcomed another little brother for her to keep an eye on, Alexander. Harry & Louis are now older than the age she reached and with each milestone they hit, it makes us wonder what she would be doing now. It’s nice that they are so close in age, it helps us imagine how she would be. The boys look a lot like her too.
Some days are intensely difficult, some are easier, but even on the easier days she is never far from our thoughts. She was the greatest gift we could have ever wished for. So, in the absence of being able to cherish her in person, we have decided to set up a fund in her memory to help research in to the treatment of rhabdoid tumours. In the hope of helping other children and families who have to endure what we did, but hopefully with more positive outcomes.
We weren’t too familiar with the Grace Kelly Childhood Cancer Trust at the time of Sophie’s illness but we have since come to learn that they are one of very few charities who focus their efforts into researching rare children’s cancer treatments, increasing awareness of symptoms to help early diagnosis and supporting families who have suffered losses. The charity was set up when they sadly also lost their daughter to this cancer.
We hope by setting up “Sophie’s wish” fund in her memory, we can help their cause and eventually reach a point where prognosis for other children is much better than the one we received for Sophie. Thank you for donating whatever you can to this worthy cause.
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