Posted on Tuesday 7 December 2021

Mason’s story: “On the worst days he could make anyone laugh”

“Mason lit up every room he entered, he touched everyone’s heart who he ever met. Whether it was his kind nature, cheeky personality or gorgeous looks, everybody loved him.

“On the worst days he could make anyone laugh, whenever I was upset he would give me his Ewan the dream sheep and stroke my arm saying ‘don’t cry mummy’

“The day mason passed he told me those words and I’ll always remember that. My thoughtful, kind son was thinking of me just hours before he fell asleep forever.”

After starting to feel unwell on Christmas Day in 2019, two-year-old Mason was diagnosed with leukaemia on Mother’s Day last year. Sadly, after months of treatment, Mason died on July 23 2020. 

His Mum, Ellie, wants to share his story in his memory and hopes it will help raise awareness of childhood cancer.

“It was around Christmas Day, he had a cough, he was snotty, which I thought was affecting his breathing a bit. He had previously suffered from bronchiolitis so I thought it could be a chest infection, something he could ride out.

“When Calpol started not working and he still had a temperature, it alerted me as his symptoms were getting worse so I took him – straight after Christmas in the January – to the doctor.”

Ellie and Mason went back and forth to the doctors being told he had a viral infection. He had two or three rounds of antibiotics over a few months.

“I was just told to keep up with the calpol despite his symptoms getting worse and his temperature never responding to the calpol.

“It literally took for Mason to be at death’s door, a week from death. His leukaemia was building up and up and up, his body was riddled. All these leukemic cells were forming a mass on his chest, which was restricting his breathing, hence his breathing being so bad as time went on.”

On Mother’s Day, Ellie called 111.

“They sent paramedics out. They were concerned about a noise on his chest so they took him up to the local hospital and they listened to his chest and they said it was all clear, sent him on.

“Then the Wednesday after mother’s day we had the ambulance back out because he couldn’t move, he couldn’t stand, he couldn’t look at lights and his breathing had got worse.

After several tests, Mason was transferred to Southampton hospital. There his Mum was told he had leukaemia. The consultant told Ellie it was the highest cell count she had seen in her career.

“It wasn’t until we were transferred to Southampton hospital when they done the tests and found this mass on his chest and said if you’d have listened to your GP for another week, Mason would have died from suffocation from this mass. He was pretty much at death’s door.

“It never crossed my mind that it would be cancer, never. You hear about it but – as cliché as it sounds – you never think it’s going to happen to you.”

When they arrived at Southampton, Mason was put on the paediatric ICU.

“He was put on an induced coma on dialysis to try and clear some of his cells. They managed to get the 750 cell count down to about 20-something. The cancer tricked the professionals into thinking it’ll be easily treated. He spent a few days in intensive care and then we were transferred up onto the Piam Brown ward where he started his chemo.”

Mason started a month of chemotherapy, with hopes this would put him into remission.  This was just as the country went into lockdown so Ellie had to stay in the hospital alone with Mason.

Mason with his Mum, Ellie

“I had to face being told my two-year-old had cancer to watching him be pumped full of treatments and steroids, which turned him into a completely different child, all in a room I couldn’t leave for 24 hours a day and on my own. I’m not saying it would be easier without covid but that was an extra spanner in the works. I had no support I had no one there for me.”

However, Mason did not hit remission so was later put onto a more intense chemotherapy plan and, sadly, this was unsuccessful and the cancer returned.

“He hadn’t even hit remission before relapsing. We found out it was because he had acute lymphoblastic leukaemia, but he also had this very rare cell mutation of the leukaemia. He was the second ever reported case in the UK.

“Consultants had no idea how to treat this. Me and my partner were given the decision on what to do in regards to treatment or palliative care at the end.”

They learnt he had relapsed when Mason had started to feel unwell and blood test results during a home visit showed his levels had increased.

“He had been poorly, refusing to eat. I was reassured its fine, children on chemo they do lose their appetite. The community nurse came round did his bloods and his white blood cells were elevated from 2 it had leapt up to 11, I knew at that point but the nurses were down-playing it saying ‘he’s probably fighting off something, it doesn’t necessarily mean that’.

“She came back the next day, had them done again and they had more than doubled. She said you’ll have a phone call from the consultant at Southampton and then she said you need to bring mason up here, it’s about an hour and a half away from where we live, so I knew instantly. She had said on the phone he needs a bone marrow transplant. We jumped in the car and that was the last time Mason was ever at home.”

When they arrived at Southampton hospital, Ellie and her partner met with the clinical care team to talk through Mason’s relapse.

“They said it’s come back, it had never gone but it’s flared up and we think it’s because of this mutation he’s got. Because it’s so rare, they did an MDT meeting, they’d spoken to consultants all over the country and everyone’s jaw hit the floor, they cannot believe this has happened after he responded to chemo so well.

“All these professionals didn’t know what to do and they said you’ve got to tell the mum that there’s less than 1% chance if you continue treatment that he’s going to come out the other end of it. We had the option of putting him through another week of intense chemo to see where his cell count was and then he would go for a bone marrow transplant if he was in remission. Then he would receive radiotherapy if that had of worked.

“But we were told a few weeks ago that if that had of worked and Mason had reached remission and got a bone marrow transplant, he would have needed radiotherapy, which – given all to a two-year-old – would have left him brain damaged. We chose the decision to stop all treatment, there was no cure, they didn’t know how to treat and I couldn’t put him through another week of intense chemo. It was like he was saying ‘enough’s enough’.

“You never dream you have to make that decision – the nurses can’t tell you what decision is right but after I’d given my word everyone came up to me and said ‘Ellie, you’ve done the right thing, we’re in absolute awe of you, you’ve made the right decision’.”

On July 23 2020, Mason sadly died at Dorchester hospital, where he had moved to be closer to his family.

“We were trying to get everyone to see him at least once. It was just me and Lee, my boyfriend, at the end. Lee had gone for a bit of sleep – we had an idea that it was near. Me and the two nurses were doing handprints with Mason and having a bit of a laugh and watching videos with him and he was sort of responding in his unconsciousness sleep.

“I said I’m going to have a little break and as soon as I left the room I was shouted at saying ‘you need to come back in’. He waited for me to leave the room but I managed to get back to catch his last breath, so it was just me and my boyfriend there with the nurses.”

Now, Ellie wants to share her story to help raise awareness of childhood cancer and encourage parents to make sure they are getting symptoms checked.

“I just want to get the word out there that if as a parent you think there is something wrong, pursue it and keep on – as cliché as it sounds, you do know your child better than anyone else and it could potentially save their life, it could make all the difference.”

Throughout their experience, their Young Lives vs Cancer social worker was there to support both Mason and his family.

“Clare was brilliant, if I had any issues while being on the ward, she would speak to the sister – there were a few rules that she did manage to bend and those exceptions that were made, made all the difference.

“I managed to have my boyfriend with me for a week – I was allowed out the room at certain times to get some fresh air and get away from the room for ten minutes. Being stuck on a cancer ward, you think it’s not too bad being in one room but you’re in there with your own thoughts.”

Ellie found out the day before Mason’s funeral that she was pregnant. Now, her and her partner have their ‘very cheeky’ seven-month-old Blake.

“Me and my partner found out the day before mason’s funeral that we’re expecting another little boy. This one would have been conceived a week before we had to make that decision about Mason, it’s a bit bitter sweet. If that wasn’t the case I don’t know what I would be doing right now, trying to deal with my grief.

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