Frank

Frank’s story – as told by his mum, Emily

Frank has been on a journey since the day he came into the world. Born at 31 weeks, weighing a tiny 3lbs, he spent the first two months of his life in hospital. He soon settled in at home with his two sisters and after a few blips he became a healthy, happy little baby.

Frank turned 1 and even though he wasn’t walking or talking, he was doing so well and we had no concerns. If he ever was unwell, usually his chest would struggle because of how premature he was and from being ventilated when he was born.

On the 8th May 2024, whilst my mum (Frank’s nan) was looking after him, his breathing changed and became more erratic. At the time, our eldest daughter was in hospital with appendicitis, so to not worry us whilst we were at the hospital with her, my mum took Frank to a private GP who prescribed antibiotics for a chest infection. As soon as my mum got him home, he was sick all over her. Frank completed the 5-day course of antibiotics and, even though his breathing and cough had improved, he was very lethargic and irritable, wanting to be held constantly and not the happy Frank he was. He was also being sick most mornings.

On the 13th of May my husband Josh took Frank back to the GP, who believed it was a viral infection and there was no reason for concern. However, Frank was now starting to sleep constantly during the day, would only settle on me sitting upright and was refusing all food as well as hardly drinking. Every morning without fail, Frank would be sick and it got to the point I couldn’t put Frank down without him crying hysterically. We also noticed if he was put down, he didn’t move from the position he was put in. I had enough and booked another GP appointment but was told the exact same thing: that it was a viral infection and could take 10-14 days to recover from.

I was so worried at this point that when we woke up the next day to Frank being sick, we got straight in the car and drove to A&E. I remember thinking even if it is viral Frank will be getting dehydrated and will need fluids or something to stop him being sick. Looking back at photos now you can see how swollen Frank’s face looks in A&E and how wide and alarmed his eyes look.

We saw a paediatric doctor, who wasn’t very alarmed by Frank’s condition and even spoke about sending us home but asked if we would like bloods to be done. We immediately said we would and were admitted to the ward. His CRP (C-reactive protein) levels, which stay low in healthy people, were raised. This meant he needed intravenous (IV) antibiotics but also an overnight stay.

Frank didn’t move off me or Josh for two days in hospital, he slept the whole time and didn’t respond to anything. An NG (nasogastric) tube was fitted so he could finally have some fluids. I knew something was wrong with Frank at this point. Call it mother’s instinct but I laid with him in hospital and sent a screenshot to my husband of an awareness page on Instagram for brain tumours. The page was from a family who OSCAR’s was already supporting.

I added: ‘This is Frank. These are all his symptoms and if he’s not improved by the morning I will be asking for a CT scan.’

When Frank was still exactly the same I was ready to speak to the doctors and raise my concerns: however, it never came to that. Whilst laying asleep on me, Frank’s whole body suddenly went stiff and flew backwards: he was having a seizure. I had no idea what was going on and screamed hysterically out for a nurse and the alarms were pulled. I was moved away whilst doctors and nurses worked to get Frank back. It felt like forever until I finally heard his little cry.

We were soon moved down to the high-dependency unit (HDU) and Frank was sent for a CT Scan and chest x-ray. At this point Frank was in a very dangerous way and was having episodes of bradycardia (a slow heart rate). Things started to happen very fast. We were soon taken into a side room, where we were told our worst fear: Frank had a large tumour at the back of his head. He also had so much fluid that had built up in brain that he was at high risk of having a stroke.

The intensive care ambulance arrived almost immediately and Frank was put into an induced coma and blue-lighted to Great Ormond Street Hospital. He went straight into theatre to have emergency surgery to fit an External Ventricular Drain into his brain to release some of the fluid and then was moved straight into ICU. After an MRI we were told the news that Frank’s tumour had grown around all the nerves near his brain stem. There was a very high chance Frank would become severely disabled if any of these nerves were damaged during surgery to remove the tumour. We were devastated.

On the 29th May, Frank had surgery for 11hours to remove his tumour. Thankfully it was a success and the surgeon was able to remove the whole tumour. Finally, some good news. When Frank came back round, I remember seeing him looking so swollen and bruised but also lifeless, unable to move his body or lift his head.

Fran recovered in hospital for over a month, but it was a very difficult recovery. Frank had one episode of sepsis, which was a huge worry for us all. He also needed a permanent shunt fitted in his brain due to the fluid no longer being able to drain itself.

Frank then received proton beam therapy at in UCLH. 33 sessions for 7 weeks, being put under general anaesthetic every day took a huge toll on Frank and he became very withdrawn and would hardly move from the sofa all day.

Once treatment finished, we really hoped Frank would start to recover and our little boy would start to show some of his personality again. Unfortunately, Frank then started to suffer with seizures and needed more surgery to change his shunt to a programmable one.

Frank is now over 2 years old.

He has many scars all over his head, has only just started to say a couple of words and is unable to walk or stand by himself, but is able to use a walker. He has an NG tube fitted due to an unsafe swallow and nerve damage in his mouth. Frank’s supported with physio, SALT (speech and language therapy), a dietician and many oncology/neurology appointments. He has also been diagnosed with epilepsy. However, our happy little boy feels like he is coming back and is the most loveable, cheeky boy who just wants to cuddle everyone and play with his cars.

OSCAR’s charity have been amazing for our family, providing us with so much support and love. They have gifted Booster Boxes to Frank and also to his sisters, as time has been hard for them as well. The team at OSCAR’s are on hand helping with any advice they can. The day that I told them that Frank was still struggling to walk, they contacted a local physio and arranged for him to have an assessment and sessions that they funded. It is a small gesture, but one that can have a lasting difference to Frank and to all our family.