Liv's Story
Four days after Liv's 11th birthday, on 27th November 2025, our world was suddenly turned upside down when an MRI found an unknown mass in her spinal cord blocking the spinal fluid between C2 and T6 including the cystic parts. The MRI came after an xray of her neck looked 'wrong' at the hospital appointment whilst checking if she had torticollis or scoliosis from a fall she had had months earlier.While we had been waiting for this hospital appointment from a doctor's referral, Liv had various treatments for her neck pain, as it was thought to be a muscular problem from a fall where she hit her head badly. I still believe the fall was contributing to the problems as she had improved but, there was still what was thought to be a persistent 'knot' in her neck.
Liv went for her first ever surgery on 5th December to remove as much as possible of the mass and take a biopsy. The Neurosurgeon removed as much of the mass as possible but because of it being in her spinal cord, it was too dangerous to remove any more and they can never remove all of it. We then had another agonising 2 weeks waiting for the biopsy results and to know what the treatment would be. We found out the week before Christmas that it was Pilocytic Astrocytoma and Liv spent the next few days having tests to prepare for chemo which was another unimaginable time. She had chemo port surgery on 23rd December, then her first chemo the next day on Christmas Eve. Unfortunately she did not react well to the chemo and we were in hospital again by Christmas morning and she spent the next few days on an antibiotic drip there. Liv had a very rough few months in and out of hospital until May when the chemo was changed as it was decided she was allergic to it and it was getting unsafe for her to continue. Since May she has been regaining herself, her fitness, her hair has started to regrow and she is able to do much more on this chemo. We just hope it is doing the job with the tumour. After never having allergies in her previous 11 years of life she has had a rough ride as she has been allergic to the chemo, the antibiotic for the chemo port, the antibiotics given for the 48 hours in hospital every time she went in with a temperature and possibly others.
Liv, like many other patients, has had her immune system suppressed to practically nothing, long periods of isolation, no energy, hair loss, 12 hour days in hospital recieving the chemo, multiple 48 hours or weeks of hospital stays a month, 40 degree prolonged temperatures, 140+bpm whilst asleep with low blood pressure needing multiple steroids to settle the tachicardia and be able to wake up, blood transfusions, rashes, nerve pain, feeding tubes because she is too nauseas to eat and losing too much weight, the anxiety of not knowing when she is going to suddenly decline and have to head straight in for a multi-day hospital stay, anxiety about infections and much more, which has only thankfully stopped for Liv because her chemo had to be changed, most patients have these symptoms for a year or longer.
Through this journey, we have been researching what the long term outcome will be of the chemo and also the tumour. This tumour doesn't go away. In the three monthly MRI's the tumour itself looks the same as before to us but the chemo should stop it growing and turn it to scar tissue. We wanted to help Liv and other children who have this tumour and suffer the neurological effects of it by raising money for research to look into a cure and also amongst other things into what makes it grow if anything, what contributes to it, what solutions there are, what treatments can have less side effects and if the tumour can ever go away from such a delicate place.
We've spoken to Liz and Sophia at RCD and they have been able to reassure us that they can use the money to help research, which we are extremely grateful for 💛
