Experiencing relapse and upheaval

The Farmer-Maia family

Bibi was diagnosed with high-risk neuroblastoma at two and a half years old. Since being diagnosed in 2018, she has undergone extensive neuroblastoma treatment in the UK, Spain, the US and Rome. After frontline treatment in the UK including completing the BEACON immunotherapy trial and accessing 8H9, hu3F8 treatment and proton beam therapy in Spain, scans showed Bibi was NEAD (No Evidence of Active Disease) and she started the bivalent vaccine clinical trial in New York in March 2022. However routine scans during the trial identified that she had relapsed in February 2023 which made her ineligible to continue with the trial.   

In April 2023, the family travelled to Italy for Bibi to be treated using CAR T cell therapy in Rome and they received the amazing results in June that Bibi was NEAD once again.   

Bibi’s mum, Laura, describes the experience of going through relapses, frontline treatment and the upheaval caused by clinical trials in New York and Rome:  

"Bibi has relapsed three times now, and each time has been absolutely devastating. For me, it was worse than diagnosis. 

"The first time, I cried non-stop for about two weeks. The second, I threw a small wooden table across the garden and smashed it. The third time, I was ready to give up all hope. But each time, you have to find a way to pull yourself together and carry on - because it's not about you, it's about your child."

Lockdown  

"Before all scans, my amazing sister is always on standby with all the latest information on treatment and trials (with the help of Donna at Solving Kids’ Cancer UK), so she is always our first point of contact. We immediately discussed possible options and got in touch with relevant hospitals. The process can sometimes feel infuriatingly slow.

"Bibi’s disease progression and relapse has meant we've had to relocate from London to Spain and then to Rome. We haven't been at home since February. We don't know anyone here, and Bibi's older sister is having online tuition."

"Solving Kids’ Cancer UK has helped us immeasurably. Donna, part of the Family Support team, told my sister about the Rome trial that Bibi is now on. We wouldn't have heard about it otherwise. The team immediately started trying to work out the logistics and how we could fund it. Everyone from the charity has been with us the entire time. We wouldn't be here now without them."

Like a miracle  

"When we found out that Bibi was NEAD following the CAR T cell therapy in Rome, I couldn’t believe it! She was actually NEAD! I wish I could have captured and bottled the feeling when they first told me. It was amazing.

"I was in a room with a random family and I just wanted to hug them all. We're normally quite cautious with good news but this time I just thought 'what the hell!' Bibi kept asking me why I was laughing and told me off for singing in the taxi ride home!  

"We are of course worried it could still come back, but we are just trying to take one day at a time. It really feels like a miracle that this treatment was available at just the right time for her.  

"To other families whose child relapses, I’d say let yourself feel angry, mad, devastated. Let all those feelings happen. Then drag yourself up from the floor, and focus all your energy on making your child as happy as they can possibly be. Because that's all that matters.”