Brave Bailey, nine, told his mum and dad after his baby sister Millie was born: “It’s my time to go to become her guardian angel”
Parents have revealed the heartbreaking story of how their dying son kept fighting cancer long enough to meet his baby sister and pick her name.
Doctors had only given nine-year-old Bailey “days or weeks” to live after cancer spread through his entire body, but he defied the odds to meet and name his sister, Millie.
With his parents Lee and Rachel clutching his hands, Bailey shed a tear and took his last breath on noon at Christmas Eve.
The young boy, from Gloucestershire, had fought a brave battle with cancer for the previous 15 months, going through rounds and rounds of treatment.
Somehow, he smiled through it all.
It started in the summer of 2016, when Bailey started feeling unwell. He went into hospital in September and at first doctors thought he might have had a viral infection, the Bristol Post reported.
When it did not improve, he was given antibiotics for a suspected chest infection, but things got worse.
He started getting severe stomach pains, and he was given a blood test. The results were bad.
Bailey was moved to an oncology ward, after being diagnosed with non-Hodgkin lymphoma, which develops in the network of vessels and glands in the body. By the time it was discovered, it was already in stage three.
Lee said: “We didn’t know anything then. When we brought him into hospital before, we thought he would be okay, and we started doubting ourselves for a bit.
“But the pains got worse and worse, and the oncology doctors told us he had to go into treatment.”
Chemotherapy started immediately, together with steroid medication. At that point, doctors thought Bailey would recover. In February 2017, he went into remission.
“They thought there were no more signs of the cancer,” said Lee. “He started back at Stoke Lodge school and from then we were home.
“He had to go in for regular check ups and routine MRIs every three months, but things were looking up.”
At Easter, the family went off to a holiday park in Devon for Bailey’s first holiday, courtesy of charity Clic Sargent. He had just done his first MRI and the doctors were confident.
Lee said: “On the second day, we were in Paignton Zoo when we had a phone call from the hospital that he had relapsed and they needed him back in. Bailey showed signs that he was breathless and tired.”
The prognosis was not good, but doctors said there was a 70% survival rate.
“He went into chemo again,” Lee said. “The doctors threw the book at it, and told us even if he survived it, the long-term effects will last for the rest of his life. He had a stem cell transplant.
“We had to try everything we could.”
Bailey fought hard, and he went into remission again at the end of July.
“We had six weeks at home with him that summer. It was amazing,” Rachel said.
Breaking the news to Bailey
But cancer would rear its head again at the end of August, and this time, there was nothing to be done.
Lee said: “Rachel took him into hospital and they said to get me in.
“I got out of work and came immediately. I was thinking about what the doctors had said before when they said if the cancer came back, there was nothing else they could do.
“She [the consultant] broke the news to us. It was late stage four, and it was even worse. It was very aggressive.”
The cancer had spread quickly. Lumps were found in little Bailey’s chest, lungs, liver and stomach.
“She told us there wasn’t very long left – it was only days or weeks,” said Lee.
“We went into the room he was in. Bailey was only nine, but we were very open with him. We told him straight away. He broke down and said he didn’t want to go on his own.
“We stayed there with him, and in a couple of hours, he took it all in. He gave us a smile and said ‘let’s go home’.
“He wanted to process it and needed reassurances what was going to happen after he died.”
Fighting to meet baby sister
It was tough for Lee and Rachel. There was little they could do, knowing they were going to lose their son.
“Those three months were absolutely horrendous. We knew he didn’t have very long, and we tried to enjoy whatever time he had left,” Rachel said.
Bailey knew he was going to pass away. He started making plans for his own funeral and wanted everyone dressed up in superhero costumes.
He was put on medication for the pain, and while it helped him a bit, he started deteriorating slowly week by week.
“We didn’t think he would last that long, but he was determined to meet Millie. It got to the end of November, and Millie was born.
“He hugged her and did everything an older brother would do – change her, wash her, sing to her,” Rachel said.
“But week by week, he got dramatically worse. He would be down and sleeping on the sofa a lot, and sometimes in bed unresponsive. It was difficult.”
Bailey was very close to his younger brother Riley and doted on his siblings.
“He knew he was not going to be here for Christmas, but we tried to get him to put together a Christmas list,” said Rachel. “He said he didn’t want to, but we encouraged him to.”
Lee added: “We were going to get everything he asked for. But most of the stuff he asked for were things he never played with. They were more suited for his little brother.
“He had picked everything for Riley because he knew he was not going to play with them.
“Doctors said he was going to go before Millie was born. He didn’t. He fought, and on the way to hospital, he said we should call her Millie.
“But the moment after he met her, he began to taper off quickly. He was slipping away.”
The family came to the house in December and his tearful nan said she wished she could take Bailey’s place.
Despite the pain – he had to have radiotherapy for five days in a row because the cancer had reached his brain – he said: “That is really selfish nan. You have grandchildren to take care of.”
Speaking about his new baby sister, he said: “I want to stay but it’s my time to go to become her guardian angel.”
On Friday, December 22, Bailey was taken by ambulance to the hospice. He had become unresponsive as the cancer wrecked his body. By the time he went in, they had to put him on strong painkillers.
“We sat there hour by hour, watching him slip away. We read him stories, and listened to his favourite music,” Rachel recalled.
“By 11.45am on Christmas Eve, we were by his bedside. We knew it was not going to be long. We told him ‘it’s time to go Bailey, stop’.
“The moment we said ‘stop’, he took his last breath and had just the one tear come out of his eye. It was peaceful.”
The last few weeks has proved difficult. Riley, only six, has realised his older brother and best friend has gone.
“Bailey smiled through it all. He pulled funny faces and made people laugh, even though he was in so much pain,” Lee said.
Hundreds dressed in colourful superhero costumes lined the streets near the crematorium last Saturday to say goodbye.
Among those in the crowd was Bristol Rovers captain Tom Lockyer, who had struck up a close relationship with the Rovers and Chelsea fan.
“We are numb, but in a way also happy he is no longer in pain,” Lee said.
Rachel added: “The hardest thing is living without him.
“We have to carry on for Bailey. He told us in our last family meeting ‘you’re only allowed to cry for 20 minutes, we have to take care of Riley and Millie’.”