Bibi was clever, sarcastic and absolutely fierce. She captured everyone's hearts with her larger-than-life personality and sense of fun. Bibi sadly passed away on the 2nd May 2024, aged 7.
In 2018, aged just two Bibi had become clingy and 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.
After her diagnosis, Bibi spent so much of her short life in hospital, including birthdays and Christmas. She had hundreds of injections, countless general anaesthetics, endless chemotherapy drugs and lost all her amazing curly hair.
"When she had a fever for four weeks, we were told it was a recurring virus. When she refused to walk because her legs hurt, then we got really scared." Bibi’s mum, Laura
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.
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.
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.
Bibi then had chemotherapy to treat the relapse and in April 2023, and the family relocated from Spain to Rome and Bibi started to be treated using CAR T cell therapy. In June 2023, scans showed Bibi was no evidence of disease! Bibi's scans continued to remain clear. In October the treating team in Rome recommended Bibi have a second infusion of car t-cells which took place in November. Scans in January and March 2024 showed Bibi remained clear of disease.
On Monday 29th April, Bibi very unexpectedly woke up with a headache and was unable to walk. She was taken to A&E where she had an emergency CT scan which showed a mass and bleeding on her brain. Her parents had to make a devastating decision whether she should have surgery which she may not survive, or not. The surgeons were able to remove the mass and some blood clots and Bibi was placed into an induced coma. Bibi sadly passed away on the 2nd May 2024.
"Our gorgeous, funny, clever, sarcastic, blobfish-obsessed girl died today. I held my hand on her heart as it stopped beating." Bibi’s mum, Laura
The family truly did everything they could, with the help of their incredible community of supporters, to ensure Bibi received the best treatment options available to her around the world.
Funds raised in loving memory of Bibi will be used to support other children like Bibi and their families through Solving Kids' Cancer UK's activities. Any funds raised through a previous fundraising campaign for access to treatment which were not spent on the child's treatment and pastoral needs are used to support other children and families through Solving Kids' Cancer UK's activities.
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