Hello, my name is Lauren and I'm trying to raise funds to support my daughter Lola while she has another stay at Great ormand street hospital for her second brain surgery in attempt to remove as much of her brain tumor as possible. Any funds raised will enable us to supply Lola with things she may want or need during her stay such as food (she really dislikes the hospital food) as well as enableing family members such as her auntie and her grandparents to travel and potentially stay in London to be nearby during Lola's procedure and recovery giving her and myself maximal support during this difficult time.

Lola's story began around 2 years ago when she started developing headaches, she would have them regularly however she would occasionally have headaches that where so severe they would wake her out of sleep and cause her to vomit. I took her to A&E on multiple occasions with these symptoms. However by the time a doctor would see Lola the headache would have subsided and we would be sent home. Considering how many times this happened and how much more frequent the severe headaches became I pleaded with the professionals that I was concerned, she also had behavioral concerns leaning toward suspected ADHD as well as balance problems and worsening eye sight. She also had extreme thirst that was later linked to Lola's condition. In June 2025 I took Lola to our local GP and requested further investigation. The GP referred Lola for an MRI scan but explained it would be a 6-8 week wait. Following this appointment we took Lola to the opticians to rule out problems with the eyes potentially causing the headaches. This appointment was what saved lolas life.

After being referred back to the hospital by the optician who had diagnosed Lola with papilledema (swelling of the optic nerve) Lola had an emergency MRI scan the following day. This revealed Lola had a tumor on the tectal plate of her brain causing a condition called obstructive hydrocephalus (a blockage causing build of cerebral spinal fluid in the brain) this was creating severe intracranial pressure and I was told she would need surgery immediately. We were transferred to great ormand street hospital by ambulance that night.

Once Lola was settled a nurse stayed with her to allow me to have a discussion with a neuro surgeon who expressed to me the severity of lolas condition. She explained that it was by miracle that Lola was walking and talking and that she had not had worse symptoms with her eyesight. When I expressed that she would have been having a scan in 6-8 weeks following referral by our GP the surgeon told me she would not have survived. Lola was extremely lucky that she had not experienced worse and potentially fatal symptoms considering the amount of pressure in her brain (MRI scan showing the amount of CSF build up in brain is in photo gallery) the surgeon talked me through the procedure (Endoscopic third ventriculostomy) they would be performing on Lola the following morning. This procedure was to open the ventricle and allow the fluid to drain and decrease the pressure in Lola's brain. They also would be attempting to take a biopsy of the tumor.

Lola was very nervous however I reassured her that she was going to go to sleep and when she woke up she would have a small bandage on her head and her headaches would be gone. Lola was extremely brave and had her surgery that day. It took roughly 4 hours and when the procedure was completed they explained to me that they had fitted an ommaya reservoir into her brain (this is a catheter that sits under the skin on her head leading to the fluid ventricle in her brain) they also expressed that they tried to perform a biopsy but was unsuccessful due to this creating a bleed and not being at the correct angle to complete this. Lola would need to recover and we would monitor the tumor with regular MRI scans. We were reassured that it appears to be a low grade glioma (non cancerous) based on the patterns of the MRI and that it shouldn't cause any further issues.

Lola had a long journey to recover and unfortunately has developed a lot of anxiety due to the traumatic events around her surgery and her complicated recovery where she experienced things such as CSF leak from the wound, stroke like symptoms, swelling of the reservoir and many other concerns. We were back and forth from hospital a lot and have been to GOSH more times than I can count.

Since recovering and finally starting to get back to some normality, Lola has been having regular scans and her last scan was on the 8th of December at GOSH, we had just been given the keys for our new home and the children were excited to be having Christmas in our new bungalow. While at the new home I was building furniture in preparation to move when I had a scheduled phonecall with Lolas surgeon to discuss her scan results. I was not expecting the conversation that we had. I was told that lolas tumor was progressing and that considering the direction of the growth they will need to operate and remove the tumor. My world fell apart and my sister had to take over the call. The surgeon explained they would need to do a procedure called a maximal safe resection where they will decrease the size of the tumor however would not be able to fully remove it because of the location they will not risk causing damage to the vital areas of Lolas brain. He was apologetic in explaining that this is not the behavior they expected from the tumor however this procedure will allow a definitive diagnosis and we will know exactly what kind of tumor it is. Also he explained that the surgery is essential to prevent Lola facing permanent damage or complications due to the tumor growing in a concerning direction. My instant panic was that Lola will be devastated as she already has server anxiety around this and that I was not sure how to tell her. Her surgeon advised that we give her the best Christmas we can and that we will proceed with the surgery in early January. We decided as a family not to inform Lola of the situation until closer to the time and further discussions have taken place, and we know all the answers that Lola will likely seek.

We are now waiting for the call to tell us when to bring Lola and we will then have to prepare her to be brave again and endure what I can only describe as the most terrifying thing I have ever faced as a mother considering I am not the one who is actually going through all of this terrible experience. Lola is 8 years old and she's facing challenges I'm not sure most people could endure. All that I can do is ensure Lola is surrounded by support and has access to anything she might need or want that might make this experience more bearable. This is why I am fundraising as a common barrier is the financial strain when it comes to traveling and staying in London. Any funding raised will go towards family being able to be present to support Lola and also ensuring Lola has anything she needs or wants that will lift her spirits and ease her discomfort.

Thank you for reading Lola's story and any support you may offer is greatly appreciated. I will update in due course.