This week I had to write the story of Milo’s illness for the website. When I say I had to, of course I didn’t have to but I chose to. And I chose to because although it had me crying throughout I also know that the more stories of our children with brain tumours people get to hear, the more they understand and the more they want to help.  So it is here for you to read in honour of the most joyful boy that ever lived: Milo Hughes.

 

Milo is Oscar’s little brother. They were so alike and yet they never met. When Milo came into our family just over a year after Oscar died from a medulloblastoma he brought with him such joy – joy that we had all doubted we would find again. Yet this little boy made the world right for us again. And as he grew up he continued to make his mark with his smiles and laughter and cheeky ways.

 

From the very beginning his amazing personality was obvious. He was always going to have things his way – he was stubborn, happy and funny. When you look at earlier pictures of Milo you will always see him up to some sort of mischief, most often in the kitchen where I would find him climbing the kitchen counter. Or, as in the very early days, actually in the fridge and preferably with whatever food he had found in his mouth, big smile on his face and the most amazing light in his eyes.

 

He ran rings around his Dad Ian and I, and as he got older it was clear who actually ruled in our house. Even his brothers Lucas and Sebastian would bow down to his superior sense of arguing. I can never quite explain and do his way of reasoning justice but suffice to say it was of impressive character and you were left with little options but to accept defeat. Even the nurses and doctors at hospital told tales of Milo’s skills. They loved his facial expressions which told you exactly how he felt and how either excited or unexcited he was by your suggestions. He put them through their paces and, as they said, rightly so.

 

He entered the world into a family who had just gone through the trauma of Oscar’s illness and death. Then in 2017, when he was almost two years old, his dad Ian got ill with cancer and life changed again. And after that it was never really normal for this little guy. Ian survived the initial bout of cancer (sarcoma to the stomach) but then he got a brain tumour (glioblastoma) in 2019 and died from this in early 2020. 

 

Throughout all this Milo was just this fantastic and happy little boy. But in the last months before Ian died, Milo’s personality started to change and he would get moody and, well, more angry really. This was put down to all the hardship of seeing Ian changing and ending up in the hospital, then a hospice and dying. But the truth was so much worse.

 

A month after Ian’s funeral, in March 2020,  Milo had a weekend of feeling ill but unable to actually be sick, being tired and sleeping all the time, and generally being so far away from our normal happy little boy. It all hit home in an instant and the signs were suddenly now clear to me. I took him straight to A&E and walked up to the receptionist and told her he had a brain tumour. He was diagnosed with five brain tumours later that evening in hospital after a scan. 

 

For myself and his brothers this was unimaginable. How could this be happening again? For Milo, well, it was like watching Oscar over again: determination, strength, laughter, stubbornness and remarkably this ability to never feel sorry for himself.

 

It turned out that we now had a third type of brain tumour in the family. Milo had a biopsy of one of the smaller and easier to access tumours which confirmed the diagnosis of Choroid Plexus Carcinoma. There was to be no surgery as one of the tumours was too deep and although we like to think of brain surgery in our family as fairly straight forward, that could really not be further from the truth.  So to operate and take some of the tumours but not all them was pointless and we turned instead to chemotherapy.

 

Milo had chemotherapy for almost a year and had the full load his little body could handle before we had to stop, as the toxicity of the chemo would outweigh the benefits. For a while we thought we had beaten it and maybe the tumours that were left, now smaller than they were, had actually died. But it was not so and a few months later the cancer started growing as leptomeningeal spread in the brain – a spread which statistically there is under 5% chance of surviving. As we were out of options for the chemo we knew worked for his type of cancer, we could do little but enjoy the last few months with him. Friends and family gathered around as they had throughout and we all put our energy into enjoying Milo and the amazing little boy he was.

 

Many friends and family were ordered or coerced into water fights in the freezing cold, superhero games, a fair amount of football even if you were rubbish, board games, dancing and eating Milo’s famous fridge cake, which no one was ever allowed to help with because he knew the exact way to make it. And funnily enough they all complied without complaint. He would make us sing the ‘Grand Old Duke of York’ as we marched up the stairs at night, but not content with just singing we had to re-enact it up and down the stairs. Even as he got more ill and tired Milo would never back down on this. In the end I carried him as I marched.

 

Wherever Milo was there was action, there was fun, there was life and there was laughter. Milo made us live and be in the moment with each other, and we now make sure we try to live our lives like this every single day.

Milo died at home with his brothers and I holding him and kissing him, surrounded by love and the knowledge that although our pain would never cease at least his physical pain had.  Once again brain tumours have broken our family. This has to stop. We set up the charity in Oscar’s name, but the initials OSCAR stand for Ongoing Support, Care, Awareness (and) Research, so this charity is for Milo too and any child that is going through what they did. 

 

In the seven years since the charity started, we have funded research that has been adopted by the NHS and is already making a difference to children who have been diagnosed with a brain tumour. Raising awareness of brain tumours to allow earlier diagnosis is also crucial, as the sooner a child has a diagnosis, the better chance they have. But support and care is so important too. I’ve seen first hand how hard it can be to even do the ‘normal’ stuff associated with having a child in hospital – getting there, sorting out your other children while you’re in hospital, parking your car and having to walk back to it late at night after chemo, feeling like there’s so few people who actually get what you’re going through, all the cancelled plans, the days and nights laid in bed. Having a child with a brain tumour changes absolutely everything.

 

At OSCAR’s PBTC we will never stop fighting to get better outcomes for these children.