In Our Hearts Stories
Less than 20% of those diagnosed with a brain tumour survive beyond five years
Soon after Max Galleni was born in July 2015, his parents, Dan and Jane, noticed a problem with his eye not opening properly and appearing swollen and red. The couple, from Cheam in Surrey, sought the advice of eye specialists and eventually a scan was carried out which detected a shadow on his brain. Once that shadow was identified as a brain tumour, three-week-old Max was scheduled for a biopsy and debulking operation and given a week to grow and get stronger in preparation. Ultimately, his teratoma proved too aggressive and complex and, despite undergoing four surgeries in his short life, he was referred to a children’s hospice for palliative care, dying peacefully in his mother’s arms in May 2016.
Here is Max’s story, as told by his father Dan …
When our son, Max, was born at Epsom Hospital on 18 July 2015, he appeared perfectly healthy. My wife, Jane, had delivered him by caesarean but, even so, we were all home within a day or two. I did notice that his left eye wasn’t really opening properly and seemed a bit swollen and red and, although we put it down to him being a newborn, something niggled at me about it. When I think back now, I realise that his eye wasn’t dilating properly and I do wonder whether, if that had been picked up on, we’d have had an earlier diagnosis, not that I’m blaming anyone. He also never rested. Our daughter, Chloe, had colic as a baby so didn’t sleep and those nights were awful but it was different with Max. He didn’t sleep for about three weeks so we went down the route of speaking to different eye specialists, including Moorfields Eye Hospital in London, and, although they could see something wasn’t right, they couldn’t find what was wrong.
Luckily, I had private healthcare through my job – I’m a senior design manager at Overbury in London – and we went to see a gastroenterologist at Spire St Anthony’s Hospital in Sutton, who said there didn’t appear to be a gastro problem so he suggested having a precautionary scan of Max’s head. We’d had scans previously but only looking at Max’s eye, not his head as such, so that was new. I needed to pop out of the room for a minute and came back to find everyone rushing around frantically and Jane sitting wondering what was going on. They then quickly informed us of a shadow on Max’s brain and sent us straight to St Helier Hospital in Sutton where they did more tests and told us it was a brain tumour.
We were put in contact with a surgeon at London’s Great Ormond Street Hospital for Children (GOSH) and informed that Max needed to have surgery but he was only three weeks old and needed to get stronger first so he spent a week in hospital having booster feeds to get calories into him. I always believed he would get over it. I thought he would probably be slower developmentally because of everything that was going on, maybe have some learning difficulties, but he was going to be fine, whereas Jane had this intuition; she really took it badly from the start whereas I was more positive. Perhaps it helped me knowing that my mum had been living with an inoperable brain tumour for 25 years, controlled with medication. When, in August 2015, Max underwent an 11-hour debulking surgery and biopsy, we didn’t quite know the severity of his situation. The results of the biopsy showed that Max had a teratoma which was extremely rare.
“We were in GOSH for 10 days before returning to St Helier and in that short time his tumour had already started growing back.”
A couple of weeks later we went back to GOSH and got taken into the ‘room of doom’ to be told there was really no hope because Max’s tumour was incurable and growing extremely fast with no option other than further surgery which was a risk to his life. That’s ‘the talk’ no parent wants to have. No news in this situation is good news but that was definitely the worst, being told there was nothing they could do. Subsequently, Max underwent one more debulking surgery before being moved to the Shooting Star House, in London, for palliative care. It was difficult because Chloe was only about four at the time. I stayed at the hospice because Jane was better being with Chloe, helping her to try and understand what was happening, and then at weekends we all stayed together as a family at the hospice.
“The fact the tumour had grown so fast in such a short number of weeks made it seem pointless.”
We’d been told there was nothing more that could be done, but then Max got stronger and started being a baby. We even got him on solids at one point and sitting up in a chair; we took him swimming every day and I started thinking that the doctors could be wrong. He developed a massive personality after that second surgery, too. He was just super tough. He loved cuddling and he used to have this thing where he would hold our finger and squeeze it to acknowledge we were there and he would smile and laugh so there was a bit of hope.
Unfortunately, he developed another problem with his left eye so we went back to GOSH to see a specialist who performed surgery to remove a layer of tissue from it, but we weren’t sure he could see out of it afterwards. He would react to light but we weren’t convinced he could see us and then his tumour started to grow behind his right eye, pushing it out. It got to the point where his eye was seriously protruding but they were reluctant to operate because it was pointless in terms of saving his life. We were putting patches over his eye to stop it from getting infected and I remember ringing the surgeon on New Year’s Day and saying ‘we’ve got to do the surgery because his eye is going to fall out.’ He saw Max on 3 January and operated two days later. They didn’t want to perform surgery again because the risk of him dying was so great but it was discussed by the hospital board and in the end the surgeon overruled the anaesthetist, saying they couldn’t just leave it. Jane and I had to sit in the room with the full team of consultants and argue our case to have the tumour removed before it pushed Max’s eye out.
“They operated for his comfort, which was a massive relief and then they stitched his eye shut to let it heal.”
We returned to Shooting Star in Hampton Court and were there about nine months in all before Max passed away on 25 May 2016. He died overnight in Jane’s arms and she didn’t know it had happened. I was just about to leave in the morning so went over and said ‘I’m off now’ and that’s when I realised and told Jane that Max was cold. At least we know he passed away peacefully, which is one good thing out of all of this because it was horrific from the start. We were able to have some time with him at home too, which is a small blessing. On the occasions we were allowed to take him home on weekends we had to have a nurse stay with us which was stressful in itself, but necessary. He needed lots of medication, had a tube because he wasn’t feeding and would have seizures, sometimes as many as four a day.
“Knowing that he suffered throughout is really hard.”
Losing Max and everything we went through with him was the catalyst for my fundraising, which I’ve done every year since. I was never really a fundraiser before, more a supporter of other people’s challenges, but the guys at Overbury said they were going to do a cycle ride from London to Amsterdam to raise funds for Shooting Star. I wanted to join them for their first day so I rode 100 miles from London to Dover the day before Max’s funeral. From then on it’s become a bit of a tradition every year to cycle 300 miles in three days. Our next one is planned for May 2022 and will involve cycling from London to Scotland.
I also started organising golf days because I realised I’m in an industry which is really generous towards charities. Jane and I made a promise to ourselves to repay the hospice for the cost of our stay and provide another family with that level of care and then we realised that we could do lots of fundraising events to give back to all the charities that helped us in one way or another. As well as Shooting Star, I’ve raised money for Promise Dreams, which grants wishes to children with life-limiting conditions and took our family on a trip to Harrods just a couple of weeks before Max passed away. Chloe dressed up as a princess and they picked us up in a horse-drawn carriage; it was perfect. We hadn’t been out as a family, except in the hospice garden, before then because everywhere we went we had to take a nurse, but that was a special day and we have some amazing photos from it.
In June 2020 I organised a golf day in aid of Brain Tumour Research, with restricted numbers due to COVID-19, but the course got so badly flooded that it wasn’t able to go ahead. We stayed for a few drinks and all the companies that were represented said to keep their entrance fees and, with the golf club not charging me for the day, that meant almost 100 per cent profit. On top of that, one of the attendees asked how much I’d be happy to make seeing as the golf day hadn’t actually been able to go ahead and I said £5,000 so he wrote out a cheque for £5,000, bringing my total for the day to £14,000, which was amazing. At all our events, I give a speech about Max and why I’m supporting that charity but I have to talk about it rather matter-of-factly because if I think about it too much I’ll just start blubbering.
“Honestly, it was a rollercoaster of emotions, drawn out over 10 months.”
“The kind of situation we’ve been through only happens to other people, until it happens to you.”
You hear about these stories and your heart goes out to the families affected and you try to imagine what they’re going through but you can’t ever really do it until it becomes your reality. I started in a bit of a daze and then I found I got quite structured, needing to find specialist doctors or medicines or new technologies. I used to play classical music to Max all the time because I read and believe that it stimulates brain activity. What is strange is how desensitised you become to your environment. When we had friends visit us at the hospice they couldn’t believe that was our life, the same as being in intensive care for five or six days and getting used to the constant beeping of the machines which is alien to other people.
“It’s only when you come through it all that you realise how intense it was in every single way, and how all-consuming.”
We had about 25 bottles of medicine in our house in addition to oxygen tanks and people coming round to check on everything but in the end that was our norm. On occasion Jane and I would pop out for a walk and leave my parents with Max; you could see the fear on their faces at the thought of having to administer his medicine on an almost hourly basis. Looking back, asking anyone to do that seems mad but it was part of our life and otherwise we’d never have had five minutes to ourselves. People ask how we did it but we had no choice. I guess the real testament is that Jane and I are still together because it was massively challenging. We were like ships that pass in the night, with one staying at the hospice and the other at home, constantly tired. If I got two hours sleep a night, I was lucky, but we did it and now we’re doing what we can to help others.
Brain tumours are indiscriminate; they can affect anyone at any age. What’s more, they kill more children and adults under the age of 40 than any other cancer... yet just 1% of the national spend on cancer research has been allocated to this devastating disease.
Brain Tumour Research is determined to change this.
Together we will find a cure