We are the Rant family; Helen, James, Toby aged 5 and Rosie aged 3. In May 2020 Rosie was 15 months old and had been out of sorts for several weeks.
We put it down to a virus, teething, acid reflux and even just being a difficult age. She started presenting with pain, wouldn’t sit in her highchair and cried when being carried up and down the stairs. She even started to regress physically and stopped walking. Upon seeing the GP, we were sent to the children’s ward at Harrogate Hospital for an X-Ray. Two days later they had found a large mass on her spine. We were transferred directly to the Leeds General Infirmary neurosurgery ward and the word ‘tumour’ was used.
Rosie underwent nine hours of spinal surgery, however only 30% of the tumour could be removed as it was intertwined with her spinal cord. We were told it was a low-grade tumour and unlikely to grow back quickly. Three months later we were knocked off our feet by the news it had grown back to the same size. She underwent another, more aggressive, nine-hour operation where they managed to remove 70% of the tumour. As a result, there was some damage to her nerves, and she lost the ability to crawl and walk. Thankfully this was temporary and with help from physio and her sheer determination she relearned these skills.
Six weeks later, at only 20 months old, she began an 18-month chemotherapy regime. Rosie completed treatment in May 2022, and the tumour has responded well. Rosie is being monitored closely for signs of relapse, she has scans every six months, and we have to monitor for changes in her walking, continence and pain. We’re now getting used to life on the other side of treatment – where chemo is no longer the focus.
In August 2020 when Rosie’s tumour grew back, she was referred to an Oncology Consultant, and we were introduced to Candlelighters by our wonderful Oncology Clinical Nurse Specialist. At the time, I didn’t quite realise the extent of how much Candlelighters would support us in the months and years to come, and that support will continue whether Rosie requires further treatment or not – we know they are always there for us.
One of my first conversations with Family Support Worker, Amy, from Candlelighters was in the oncology clinic during Rosie’s first chemo session, and we spoke at length about how to speak to Toby and Rosie about the cancer diagnosis. She did not tell me what to do or say; she just helped me navigate my thoughts and validated how I was feeling. I had some very lonely times in hospital with Rosie, but the Candlelighters team were always there to make me a strong coffee, to discuss issues or just chat about trashy TV.
It was so important that there were members of staff at the hospital who don’t do invasive treatments on the children; the Candlelighters support workers helped Rosie avoid making too many negative associations with the hospital. On the ward, the Candlelighters support workers go above and beyond to make the experience as enjoyable as possible for Rosie. Elaine (the Candlelighters Dinner Lady) would search out ANY food that Rosie fancied – she was losing weight drastically but was given every opportunity to eat whatever she may have fancied, and this contributed to her recovery.
Rosie would love visits from the Candlelighters-funded Play Workers, it was a super distraction from the nasty things, and it gave me a break from entertaining a toddler restrained to a hospital bed. Toby also started struggling with his emotions and became extremely squeamish. The Play Team provided me with ideas to support him and help him understand what cancer is. He has also benefitted from attending the Sibling Support Groups at The Square. It has been so nice for both children to have a positive focus associated with childhood cancer.
Both my husband and I have utilised the Talking Therapy sessions that Candlelighters provide, and I have no doubt we may use this service again as we navigate our life post-chemotherapy. After every Talking Therapy session, I would feel like a weight had lifted from my shoulders, and I can’t articulate the difference this made to my mental health – it ensured I was resilient and strong enough to support and care for Rosie.
Candlelighters also provided little treats and luxuries that we would never have prioritised. We will forever be grateful for the holiday to Centre Parks that we had funded when Rosie was on chemotherapy. The children still talk about it; it is such a wonderful memory during a difficult time, and truly provided our whole family with some respite.
People don’t like to think of childhood cancer, but when you are faced with it, the impact is indescribable on the whole family. It is so reassuring knowing that Candlelighters will be there for us no matter what the future holds for Rosie – I honestly couldn’t imagine going through a childhood cancer journey without their support, and we will forever be grateful. – Rosie’s Mum, Helen
We would love your support this Christmas, to make sure we can be there for children like Rosie and her family. If you’d like to make a donation, click here.