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"With him every step of the way": Milo's story

March 29, 2023

Milo was in his final year of secondary school, preparing for his GCSEs, when he received a shock brain tumour diagnosis. A major sight-saving operation at Southampton University Hospital followed, leaving his desperate parents, Sally and Derrol, fearing for their youngest son’s life.

Thankfully for them, Ronald McDonald House Southampton was able to ease some of the huge burden they faced, by providing them with free ‘home away from home’ accommodation for the duration of Milo’s hospital stay. Happily, the operation was a success and although Milo went on to need further surgery just five months later, he is doing really well, thriving in sixth form, and has aspirations to become a professional photographer.

Guest blogger: Sally

Like many other families, we all came down with Covid-19 at the same time. For us, it happened in the summer of 2021. Our youngest son Milo, who was 16 at the time, had a run of illnesses, and when he went back to school in the September to join Year 11, he felt his vision wasn’t what it should be.

I tried to book an eye test for Milo, all our local opticians had no appointments available. There was a Covid backlog of people requiring eye tests, they were all full. Then one day, I was walking past Marks and Spencer in Southampton and happened to see an advert for M&S Opticians. I didn’t even realise M&S offered eye tests, but I jumped at the chance of booking him in, especially since Milo was now getting headaches as well.  

In the meantime, we had made many visits to the GP, they said Milo’s symptoms were probably related to Covid. We were reassured that because Milo was young, fit, and healthy, we shouldn’t be concerned.

The appointment at M&S Opticians was during October Half Term. They did a thorough investigation, which revealed the optic nerves in both eyes were crushed, we were sent immediately to Southampton General Eye Unit.

We spent a few hours at the Eye Unit, reeling from the news we’d had at the opticians. We were sent home that evening and assumed things couldn’t be that bad otherwise, they would’ve kept Milo in overnight.

A few days later, my husband Derrol took Milo for a follow-up appointment with the Neurology Department, expecting it to be something of nothing. However, they got home at around 8pm that evening, to have to share with me the news that Milo had a brain tumour. They suspected it was a craniopharyngioma, which had grown around the pituitary gland. They didn’t know at that point if it was low or high-grade, but they said if they didn’t operate immediately, he would without a doubt lose his sight.

We threw some things together into a bag and informed the people who needed to know, and we headed back to the hospital the following morning, the magnitude of what was happening began to hit us. These things happened to other people, not us. We were about to become part of a world we previously knew so little about.

When we checked Milo into G2 Children’s Neurosurgery ward, Derrol and I were fully prepared to alternate sleeping in the car. Neither of us wanted to be any further away from Milo than we needed to be. The hospital was still operating under strict Covid control measures, so only one of us was allowed to be with him at a time. The promise I made to Milo was that whatever happened, we’d be with him every step of the way. The Ronald McDonald House, situated within the hospital grounds, allowed me to keep that promise, Derrol and I were not even aware that such help existed, we were so grateful to have somewhere to rest albeit in short bursts.

The House blew us away. It made such a difference. The first time I stepped into the House was the day of Milo’s surgery, while he was in theatre. Derrol had already checked in and stayed there the night before while I stayed at Milo’s bedside. I was so tired when I arrived but also so relieved. I desperately tried to get some sleep, knowing I’d have to be strong and alert ready for when Milo woke up.

After a short ‘power nap’, I was able to shower in our en-suite and then Derrol and I went to sit in the communal kitchen on our corridor. It helped to have a bit of life around us and we could see the hospital directly opposite, so we knew we were minutes away if needed.

When we got the call from Sister Sarah, the nurse on G2, to say that the surgery was over and everything was OK, it was just wonderful. We then had just a short walk to go and see Milo in recovery. On our way to see Milo, we went to the ward to see his amazing surgeon, Mr Aabir Chakraborty, who, in his typically humble way, told us that the operation had been a success.

When I think back to the car ride to the hospital, when I looked out of the window wondering whether Milo would ever see those beautiful views ever again; it was so intense. But there we were, seeing our boy in recovery, and he woke up and could see us too. It was just incredible. The good news kept coming when we found out that the tumour wasn’t cancerous.

We were in the House for about two weeks in total, while Milo recovered in hospital. When we came home, we were still reeling from what had happened and felt traumatised, but all the while we were so grateful that everything had gone as well as it could have done.

Milo was still having regular MRI scans to monitor the tumour and in February last year, it was decided that with 50% of his tumour remaining, he’d need more surgery. It was another sucker punch but this time we would be more prepared. The second operation took place in April 2022, another amazing consultant, Mr Nijaguna Mathad performed endoscopic pituitary surgery through the nose. Again, it went well but recovery from this surgery was trickier, and his stay in hospital was six weeks.

Once again, the Ronald McDonald House supported us throughout. We were so grateful to be given a room again and this time, we knew what to expect. I prepared lots of healthy, home-cooked meals for Milo and kept them in our freezer compartment at the House. There’s nothing like a taste of home to make you feel better!

The House also had a fantastic impact on Milo’s rehabilitation. He would regularly come over on a Medical Pass from the ward and spend a few hours with us in a more homely environment. Milo thought it was great and the change of scenery was so good for him, it was quiet, restful and we could eat together as a family.

For me, the House had other benefits too. Being able to do our washing was so useful, we were able to survive on what we had brought with us, no need to leave Milo. What’s more, having other parents around to talk to, who were going through similar experiences, was so invaluable. There were lots of hugs.

Several months after we left the House, my good friend Caroline told me that her employer In Home Care had chosen Ronald McDonald House Charities UK to support, because of our experience of staying at the Southampton House. They held a raffle at Christmas, which raised more than £500. Because of their efforts, they were able to have a plaque placed on the Giving Tree in the reception area of the House.

Amazingly, Milo managed to pass all his GCSEs with flying colours. There’s no stopping him now; the world is his oyster. He’s now at college studying Photography and Digital Media and has aspirations to work in the media when he graduates. He has shown incredible fortitude and resilience, we feel so lucky and so proud of how far he’s come.

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