A Story of Extraordinary Courage
Frankie Rose is a beautiful, energetic six year old but a spate of bruises and odd leg pains resulted in mum, Michelle, taking her to the doctor’s.
Initially Frankie Rose was seen at Darent Hospital in Kent where an MRI scan revealed Hydrocephalus (a build-up of fluid around the brain) and a possible brain tumour. She and her family were quickly taken by ambulance to King’s College Hospital in London. There, Frankie Rose initially had surgery to drain the excess fluid from her brain and to fit a shunt to keep it drained, followed a few days later with a biopsy.
The results of the biopsy were devastating; Frankie had grade two cancer with a tumour lodged at the base of the brain and around the spinal cord. She was booked in to start chemotherapy the following month. What do a family do once they receive such a blow? How do they cope? For the family it was time to step up, first they celebrated Frankie Rose’s seventh birthday and then mum and dad, Michelle and Sam, decided to legalise their long 15 year partnership by getting married, which also allowed Frankie Rose to become the best bridesmaid in the world.
It was during this period that the Camberwell House team also got their first understanding of the strength and core values of this remarkable family. Not only were they celebrating birthdays, getting married and preparing for a long course of chemotherapy having just had some of the worst news that any parent can imagine, this family remarkably also set aside time to fundraise for the House and raised an initial £240.
However a week after the wedding, Frankie Rose started her planned 18 month chemotherapy treatment with the Proton Beam therapy in the USA to follow once she was 10. If only things went to plan but sometimes this is just not the case.
The chemo treatment didn’t help, it not only resulted in Frankie Rose losing 20 pounds in just 10 weeks while being hospitalised for over 70% of the time (which is rare). But more shocking was the fact that the tumour had tripled in size, which in itself was unimaginable. This meant that Frankie Rose was no longer eligible for the cutting edge Proton Beam therapy on the NHS which was a tremendous blow for the family.
Michelle and Sam had learnt enough about the various treatments available for cancer to decide that the Proton therapy option offered a very specific treatment unlike the standard radiation and with this knowledge the family decided that there was no option, Frankie Rose was going to get the Proton Beam treatment.
The question of how to raise the £150,000 needed to send a child to the USA for the Proton treatment as a private patient weighed heavily on the family. But with passion and determination the family set about brainstorming various ideas. The first thing they did was to put their home up for sale for £150,000, cash only buyers. They also created a ‘Go Fund Me’ page through Facebook, hoping to raise further funding. With their whole world in turmoil it took just three days for their world to change again, beyond their wildest dreams. The Go fund me page had raised £80,000 in three days! Michelle recalls it being a very scary time; so many big things were really starting to happen.
By the fifth day the fundraising page had reached the target of £150,000 and the donations were still coming in thick and fast. Michelle vividly recalls the feeling that they were in the middle of a miracle, one day they were desperately trying to sell the family home to finance treatment in the States and within days their prayers had been answered. Not only did they have enough for Frankie Rose’s Proton Beam treatment but they had enough for the whole family to go with her. It was beyond their wildest dreams. But unbelievably the family were not yet on an even path, fate had yet another hurdle for them. Frankie Rose was readmitted to hospital with suspected build-up of fluid in the brain again in November. This meant she would not be fit to fly to America. But fate turned again and by the Wednesday Frankie Rose was given the green light, she was fit to fly!
Michelle recalls, “Looking back I wonder how we did it, but having the focus of the Proton Beam treatment helped.”
The family arrived in Oklahoma, USA on the Friday morning. Having the funds for treatment, accommodation and flights meant not only were they able to go as a united front - mum, dad, both brothers Alfie and Freddie and Frankie Rose but they were also able to fill the time when Frankie Rose was not undergoing treatment to build lots of wonderful memories which included a family break to Florida and a visit to a rodeo in Texas.
Arriving in Oklahoma without friends or family turned out not to matter at all because as Michelle felt that they had landed in “the nicest place on earth”. She recalls the family being invited to a Thanksgiving dinner with their landlords, who also introduced them to their church and provided the family with a very memorable Christmas. It was the start of a special relationship that continues to this day.
The Beads of Courage programme is a way to recognise the strength of children’s achievements. The idea was first conceived by Jean Baruch, a paediatric oncology nurse in 2005 and its message of both courage and achievement has since spread worldwide. Children receive their first name in beads when they start the programme with additional beads added as their journey progresses. Each bead tells a story, white for chemotherapy, blue for a clinic visit, brown for hair loss and red for a blood transfusion and so on.
During Frankie Rose’s long journey she has built up a truly impressive collection of Courage Beads. To date the Frankie Rose’s Beads of Courage is 1,000 cm long, and is the result of a journey most of us can scarcely imagine and it has been undertaken by this remarkable seven year old with the support of her family and an army of 8,240 supporters behind her.
Michelle’s message to anyone hearing their story is to never give up hope, always find the positives, although she does admit that it’s not always easy. The whole family will always remember the three months they spent in the States, the friends they made, the positive reactions of the people they met, and it is something that Michelle will be eternally grateful for.
Frankie Rose returned to King’s in May this year and the House team were delighted to be able offer the family a room with again. After many months of further treatment, Frankie Rose is now waiting for an implant of an internal shunt to drain any excess fluid from her brain while the tumour continues to shrink and die. After the towering mountains that she has already climbed this is a relatively small peak, and once this shunt is comfortably in place, the family can look forward to spending the summer at home which will be a momentous day for all the family.