Milo's Mission

This is Milo. Our beautiful, smiley, happy-go-lucky, loving little two-year-old boy. Milo was a force of nature, absolutely bursting with life and he made friends with everyone he met. He loved dinosaurs, trains, planes & helicopters, the playground, complex jigsaw puzzles, reading books, and his family. He was doing so well at nursery and was speaking with the vocabulary of a 3–4-year-old. He loved football and we took him to football practice at least once a week. He was a bit of a jet setter and visited lots of different countries.

Milo was an active, healthy toddler until around a month before his diagnosis. He usually had a great appetite and had a full second dinner once he got home from nursery but we noticed he wasn’t quite as hungry. He was also not going to the toilet as much and was less boisterous than usual, although these changes were subtle. He had started potty training at the exact same time the symptoms appeared and was resisting it quite a lot so initially we put it down to that. One day, he woke up looking pale and he was acting lethargic. He complained of stomach-ache, and we thought his stomach was swollen. We called 111 who advised us to go to A&E.

We spent most of the day in A&E. The nurse who triaged us, thought Milo just had a viral infection and referred us to the urgent care GP in the hospital. The GP took our concerns seriously and referred us back to A&E. While we were with the GP, we also noticed some prominent abdominal veins we hadn’t seen before. The A&E doctor didn’t take us very seriously, she seemed to make up her mind as soon as she looked at Milo and unfortunately misdiagnosed him with constipation and a viral infection. She even felt a mass in his stomach, but presumed it was faeces. The nurse who took his blood pressure also dismissed it when it was high and told us “don’t worry, it’s not very accurate in children”. Unfortunately, we now know that Milo had red flag symptoms of kidney cancer, and he should have had further tests. If the doctor had carried out the appropriate tests, Milo would probably be with us today and that is really hard to take.

At the time, we were relieved the doctor had confirmed nothing serious was wrong. Milo seemed a bit better in himself but still wasn’t eating as much or going to the toilet consistently. After a few weeks we noticed his energy levels had dipped, he was still pale and his stomach had gotten bigger so we took him back to the GP who sent us straight to A&E for more tests. The GP advised us to go to a different A&E this time and they took us seriously. That night our world fell apart as the doctor explained he thought Milo might have blood cancer, and they would need to do more tests to be sure. The blood tests came back clear, but the following day an ultrasound revealed a large mass on Milo’s left kidney. Milo was diagnosed with Wilms Tumour, a type of Kidney cancer. 

Hearing your child has cancer is a parent’s worst nightmare. However, Wilms tumour has a really good prognosis, and when we got to Great Ormond Street Hospital we were told Milo’s cancer was curable and we were so relieved. Milo’s cancer was localised, stage 2 and standard risk, all really good news. Unfortunately, the tumour had also grown into and up his Inferior Vena Cava “IVC” (the main vein in your body) and into the right atrium of his heart. Less than 10% of cases have this extension. It was so scary to see the MRI and see the tumour in Milo’s heart.

Milo’s treatment plan was chemotherapy, followed by complex surgery and more chemotherapy/radiotherapy. Unfortunately, things went wrong pretty much immediately. Milo’s chemotherapy did not shrink his tumour, and instead because the tumour was blocking his IVC, it caused huge liver damage. The liver damage combined with the large amount of IV fluids Milo was given, meant that most of this fluid leaked out from his veins into his abdomen causing severe ascites. Milo gained 3kg of weight, all fluid, in the first few weeks he was in hospital. This fluid put a huge strain on his little body, compromising his breathing and compressing his internal organs from all the pressure. This led to him going on an intubator and ultimately leading to multi-organ failure. He made it through his surgery to remove the tumour. Unfortunately, five days afterwards on 26th November 2024, Milo tragically deteriorated and passed away, less than 6 weeks after he was diagnosed.

Before Milo was diagnosed, we ashamedly knew very little about childhood cancer. We thought it was rare, but it’s not. It can also grow ridiculously fast. Early symptoms can be vague and similar to lots of other common illnesses so even the medical professionals don’t suspect it. Milo was misdiagnosed which cost him valuable time and we now know this is common. In Milo’s memory, we want to raise money to help increase awareness and help other children get diagnosed faster.

Milo suffered greatly from the side effects of his chemotherapy treatment. Chemotherapy is very toxic, and even for those children who survive, many have long term health complications from chemotherapy and radiotherapy. We are also raising money to help fund much needed research into kinder treatments for children, so other children don’t have to suffer like Milo.

Milo was a brave and kind boy throughout his life and treatment. We are so blessed to have spent two and a half years with him.  In Milo’s memory, we want to make a difference so other families don’t have to go through what we have.