We're a team - tackling life together

Life Together

Watching your baby boy, still so little, so vulnerable, and who you love with a deeply protective intensity, go through life-changing illness and treatment is incredibly hard. Watching your wife, and the mother now of two of your children, go through her own cancer journey is hard in a new and different way. At that point it almost seems that you have two choices, to allow yourself to feel the fear, the bitterness and the anger that these experiences can bring, or to choose to try to see each day as a new one. A hopeful one, because ‘who really knows what the future holds?’

Neil and Claire were married in the summer of June 2010, a truly beautiful day surrounded by all their loved ones, including Yasmin, Neil’s daughter. When they decided they’d like to start a family it didn’t happen straight away, but in the summer of 2013 their son Max was born. He was, Neil explains, “fine, he was healthy.” When Max was 6 months old they were invited to a wedding, leaving Max with Claire’s parents. On their return Claire’s mum told them that Max wasn’t well, that something ‘was just not right about him.’ When Max heard Claire’s voice he roused a little, but he remained lethargic and sleepy so although they thought he likely just had a bug they took him to out of hours to be checked out‘just to be on the safe side.’

Although two out of hours doctors told them Max was likely only teething, Claire was not convinced, and took him to A&E where he was kept in overnight with suspected gastroenteritis. She had noted that his fontanelle was raised however, and when they were eventually seen by a paediatric consultant he agreed. “I can remember it. I can remember it clear as day. The doctor said I’m just going to do an ultrasound on Max’s head. They did the ultrasound and there was this awkward kind of silence, looking back that’s when he spotted something. The doctor said ‘I don’t want to scare you, but something is there that shouldn’t be there.’ This is when he found the pressure, it was hydrocephalus (excess fluid on the brain) that was causing the pressure but he also found a brain tumour.”

An ambulance blue-lighted Max and Claire straight to Alder Hey, the closest specialist children’s hospital, with Neil following behind in the car. He recalls that in those first few hours they were not given a lot of information, and that although the doctor had advised that it was serious, they didn’t really know what to expect, or what was going on. Once there, the team at Alder Hey confirmed via a CT scan and an MRI that Max had a tumour. They advised that he needed an emergency operation, urgently, and their lives were forever changed.

“It was then that this whole nightmare started, and you know you just never expect it to happen to you, you just don’t think it will. So this whole kind of journey began, and we spent months in hospital, the tumour, the shunt operation, then it was the chemotherapy to treat the brain tumour. Looking back you think ‘How did we get through that?’ Max was so small, he wasn’t even a year old, and he was going through that, it was really difficult. Really difficult. I don’t actually know if we could get through that again, what we’ve been through.”

Max was diagnosed with an astrocytoma brain tumour or an optic pathway glioma, and at just seven months old their perfect baby boy was registered as severely visually impaired, a devastating secondary effect of the location of his specific tumour. Over the following years, Max had to have chemotherapy four times, and at three years old he was given permission to try a new treatment that was being studied as part of a clinical trial through Great Ormond Street Hospital, but ‘off trial’, on compassionate grounds.

Today Max is nine years old, he has complex needs, both medically and developmentally, and yet despite the many ongoing challenges he faces he is thriving. The family’s lives are busy, filled with multiple hospital appointments as Max needs regular check-ups, blood tests, ECHO and ECG scans every three months to monitor his heart function, regular courses of chemo drugs, iron infusions, and the list goes on. The tumour itself cannot be removed, and it has left him with lifechanging disabilities. But despite the odds not only can Max walk, he is also busy cane training at his specialist school setting and despite some balance and mobility issues his independence is slowly growing.

Neil too has grown and learnt. Reflecting on those early difficult days He explains that “we all want a healthy child, don’t we? You expect to have a healthy child, but over time we just sort of accepted that Max is always going to be Max, he’s always going to be really complicated, he’s visually impaired, he’s nonverbal. When you have a child of that age and with that diagnosis, I almost think they need to get across to you that their life isn’t going to be normal. It sounds horrible to say it like that, but I understood very early on that Max is always going to be complicated.

Now that’s just the norm, it’s our dayto-day with Max.” Neil feels that the hardest part is learning to understand what has happened, to learn to accept it and that once you do it becomes easier to deal with.

Life moved forwards, and in late 2017 Neil and Claire’s beautiful daughter Ava was born, their family was complete. Family life was hectic, happy but hectic with a younger child as well as Max to care for. Just before Christmas in 2020 when Max was seven and Ava was three Claire was diagnosed with stage 3 breast cancer. “I remember that we were in our bedroom, and I was getting dressed and Claire said ‘oh, by the way, I found a lump, I booked an appointment at the doctors.’ She was not overly concerned about it, but she went to the doctors and they were pretty sure it was just a cyst but they sent her to get it checked out anyway. I remember the day clearly, when I came home Claire was in tears in the hallway. I’ll never forget it. I just knew it was bad.”

The consultant that Claire had seen had told her she would need to see her again, to go over the biopsy results, and advised that she should bring Neil to the appointment, as she was ‘quite concerned.’ With their experience of the language often used by doctors they both knew this meant it was likely serious, but that still did not lessen the devastating shock they felt when the consultant confirmed their worst fears. “We went into the consultant’s room and she said ‘OK, I’m sorry Claire, you’ve got breast cancer.’ That was literally it. She didn’t try and dress it up or try and soften the blow. It was like, there it is. It just took me back to being sat in a room with Max.” Looking back at that time Neil recalls how strong Claire was, and how positive. That isn’t to say it wasn’t incredibly hard on her because it was, but perhaps because of what she’d already been through with Max, and the very real demands that their family life continued to place on her she seemed to find an inner reserve of strength to draw from.

Max needs a great deal of care, the structure and routine of his everyday life are incredibly important in terms of ensuring he sleeps, is settled and remains as well as possible, so they had to find ways to adapt and cope. Neil took on as much of the childcare as he could to give Claire time to rest and recover after her gruelling treatment, but she’d often try to carry on, telling Neil he should go to work, that she could manage. “I remember one day coming in and Ava said to me, and I felt terrible about this, I’ve never actually talked about it before, but she said ‘Daddy, Mummy was crying earlier’ and it just killed me. Because I felt like I shouldn’t have been out at work. I’ll never forget those words.”

When he was growing up Neil loved basketball, he played as a Junior for the North West England team and for the Jets. A back injury saw him start to referee, almost by chance, but he was good at it and things progressed. He is now a referee in the British Basketball League (the top league). Neil credits his ability to communicate well with people as being central to his career development. You have to learn how to stay calm, considered, fair and firm in high-pressure situations, where the stakes and emotions are running high.

Neil also works as a taxi driver, a role he feels has taught him a huge amount not only about communication, but about people, and about life. Although it might not always be easy to do when life gets hard Neil talks to people, he shares his worries, his concerns, and his fears with those he trusts. Not everyone has been able to be there for him, for some the journey they were on with Max was just too hard perhaps, too difficult to bear witness to. “I have a close set of friends, not a huge amount but the guys that are around me are close. I had one friend, who was probably my best mate, where we’re not friends anymore, he struggled with what to say and what to do, and I was a bit disappointed with him.”

But Neil found people he could lean on, one friend, he recalls would always say ‘Tell me all about Max, tell me what’s going on’ and it really helped to know that he cared, and wanted to listen.

Neil and Claire have also had to learn how to navigate their way through this unexpected world of special needs parenting by becoming a team, and by learning to really communicate with one another. Neil remembers how, in the early years of their relationship if they had an argument they might not talk properly for a few days, but after Max’s diagnosis things changed because they had to. “I remember Claire saying that we can’t do this, we’ve got enough on our plates so whatever it is we need to get it sorted out now and crack on. We have to be on the same team, they’re the words that Claire used. ‘We’re a team and I can’t do it without you’.”

But what do you do when your partner, the other half of your team, is the one you need and want to be strong for? Once again, he found comfort and support in talking. Neil recognises that for many men talking might not come easily, or might not feel like it will help, but for him it does. “Probably it’s a bit about personality and maturity, and maybe going through what I’ve gone through with Max has helped. It sort of grounds you, a diagnosis like that, and you definitely look at life differently than maybe you would have.”

About Contact

Astrocytoma brain tumour (optic pathway glioma)Children can develop an astrocytoma at any age, and boys and girls are affected equally. The main treatments for astrocytomas are surgery, radiotherapy, chemotherapy and steroids to help reduce swelling in the brain. But whilst surgery is the main treatment sometimes surgery is not possible, this was the case for Max.

Stage 3 breast cancer – Cancer is referred to as being on a scale of stages, there are five stages of breast cancer, starting at zero and going up to four. Stage 3 means that cancer has spread from the breast to lymph nodes close to the breast or to the skin of the breast or to the chest wall. It is also called locally advanced breast cancer.

Visual impairment - Depending on the severity of vision loss people are typically registered as sight impaired (previously “partially sighted”) or severely sight impaired (previously “blind”).