Bibi's urgent campaign

At two and a half years old, Bibi suddenly became very clingy and unhappy. Her parents thought it was just a phase. But she was diagnosed with high-risk neuroblastoma, an aggressive childhood cancer that has a 40-50% chance of long-term survival.   

Since being diagnosed in 2018, six-year-old Bibi has undergone extensive treatment in the UK, Spain and the US. Bibi’s family started fundraising in 2019 in case Bibi needed further treatment, and over £250k raised through Bibi’s campaign alongside family funds has meant she’s been able to access all the treatment needed so far that’s not been available on the NHS, in Spain and America.

Right now, and following Bibi’s relapse in February 2023, Bibi’s family are asking for your urgent help to raise a further £200,000 for Bibi to be treated using CAR T cell therapy in Rome with the hope of getting Bibi back into remission again. Enough money has been raised to enable Bibi to start the therapy but to complete the therapy, the full fundraising target needs to be reached. 

The fundraising target has been carefully formulated by Solving Kids’ Cancer UK considering the treatment cost and the associated costs of accessing treatment specific to the family's needs and requirements. Follow Bibi's story on social media.

Bibi’s story 

Bibi has spent so much of her short life in hospital, including birthdays and Christmas. She’s had hundreds of injections, countless general anaesthetics, endless chemotherapy drugs and has lost all her amazing curly hair.   

Bibi had already become clingy by the time she had stopped eating and after weeks of trips to the doctors and A&E, her family were called into a room at the Whittington Hospital and told the news that turned their lives upside down. There was a lump, and it was suspected neuroblastoma, a rare form of childhood cancer. The family went to Great Ormond Street Hospital the next day and started intensive chemotherapy within the week. 

Accessing the BEACON immuno trial   

When Bibi’s disease progressed in May 2019, the standardised frontline treatment plan was paused for Bibi. She went on to complete six cycles of treatment on the BEACON immuno trial until May 2020 and her post-treatment scans showed stable disease.   

The next steps planned for Bibi were to enrol on the MiNivAn trial in the UK and then undergo surgery to remove the original tumour. However, due to the COVID-19 pandemic, the MiNivAn trial was closed to new patients. This meant Bibi continued to be treated with BEACON chemo – the plan being to access the MiNivAn trial when it reopened and thereafter have surgery.   

Treatment in Spain  

In June 2020, whilst a second opinion was being sought by the family about Bibi’s surgery, a spot in Bibi’s brain seen in a prior scan had increased in size, although other disease was deemed inactive. After consultation, the family decided that 8h9 treatment (radio-immunotherapy treatment direct to the brain) at the Hospital Sant Joan de Déu Barcelona in Spain was the best option for Bibi.  

After having surgery on the brain spot, Bibi received craniospinal radiation before receiving 1 cycle/round of 8h9 treatment and then surgery to remove her original tumour. Bibi then went on to access 5 cycles of further immunotherapy antibody treatment (hu3F8).   

Bibi completed 14 rounds of proton beam therapy, which is not yet available in the UK for neuroblastoma, at the Quiron Salud centre in Madrid, then started an oral chemotherapy drug to tackle any potential leftover rogue cancer cells to be clinically ready to start the bivalent vaccine clinical trial, the planned next step.  

Accessing treatment in Spain was made possible for Bibi by the incredible community that supported her fundraising campaign.

Vaccine trial and relapse  

When scans in 2023 showed the great news that Bibi was NEAD (No Evidence of Active Disease), funds raised through the campaign also enabled Bibi to go on to enrol on the bivalent vaccine clinical trial in New York in March 2022 with the aim of keeping the cancer away for good.  

Then in October, Bibi’s MIBG scan showed a questionable lesion in one of her lungs which was suspected disease. Following this in November, the family went back to Barcelona for Bibi to have surgery and the lesion was successfully removed.  

Bibi then continued the vaccine trial and received the sixth vaccine in December 2022 but a routine MIBG scan in February 2023 highlighted the same spot in the lung area. Surgery in Barcelona was scheduled for Bibi again, and she had a section of her right lung removed which was identified as neuroblastoma. Further scans showed two small spots in the cranium - Bibi had relapsed and was therefore unable to continue with the vaccine trial. Doctors believe the vaccine trial has had some effect on disease progression because the disease appeared to be slow growing, which was unusual.  

Since then, Bibi’s had chemotherapy to treat the relapse and in April 2023, has just started to be treated using CAR T cell therapy in Rome. 

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_{Solving Kids' Cancer UK's children's fundraising campaigns} 

_{Funds raised will go towards helping Bibi and their family. If Bibi no longer needs the funds or is in remission five years post the end of successful treatment, the funds will be used to support other children and families affected by neuroblastoma through our activities. For children with high-risk neuroblastoma, like Bibi, the survival rate is much lower than other childhood cancers. Upon relapse, this rate reduces even further.}