“All he knows is hospital life”- Meet five-month-old Ralphie

Hearing that their three-week-old baby Ralphie needed to be transferred to GOSH was a “very hard moment” for Sophie and Luke.

A year before, the couple had spent time at GOSH with their first-born baby, Huxley, who sadly passed away when he was a few days old.

“You can imagine how we felt,” Sophie says.

“It’s somewhere we never ever anticipated coming back to,” Luke adds.

Having spent three days at his local hospital, Ralphie was transported to GOSH by ambulance in the middle of the night after a test showed his white blood count was “through the roof”.

“It was pouring with rain,” Luke recalls. “His little body was on a stretcher.”

A few days after arriving at GOSH, Sophie and Luke were taken into a room and told Raphie had acute myeloid leukaemia (AML).

Upon hearing their son’s diagnosis, Sophie ran out of the room.

“I can’t remember where I went,” Sophie says. “I kept thinking, ‘We lost Huxley last year; I’m not losing another baby. It’s not happening.’ My whole body just went into shock. I was literally shaking. I wanted to scream.”

“When you hear that diagnosis, it’s awful, painful,” Luke says. “It’s like your heart was being ripped out of your chest.”

Luke sat with the consultant in the room and went over “absolutely everything”.

“I like to take every piece of information in,” he explains.

“I’m not going to lie, the survival rate percentages were going through my head,” he adds. “When they said 30% because he’s so young, for us, it was ‘How on earth are we going to get through this?’”

Sophie and Luke learned that Ralphie’s treatment would last six months.

“That’s when it hit me - for half of year, my loved one is going to be in hospital,” Sophie says.

“You feel that it’s not real, this isn’t happening – we’re going to wake up in a minute.”

Despite how frightening the situation was, with help from Ralphie’s consultant, Sophie and Luke focused on the treatment plan. Together they managed to adopt a positive mindset.

“We spent the first week crying; our world had fallen apart,” Sophie begins. “But then we thought, ‘we aren’t going to be like this anymore’. With Huxley, we didn’t have a chance. With Ralphie, we have a chance. We grabbed it, and we took it.”

A few procedures and tests took place straight away, ahead of Ralphie starting treatment.

“He had to go and have his [Hickman] line fitted to save cannulas going into his hand,” Luke explains. “He had a lumbar punch, and he also had a bone marrow aspiration. That is the test that gives you an idea of how many cancer cells are in his bone marrow. They take that as a base level.”

Based on tests, it was decided that Ralphie would have four rounds of chemotherapy.

“The genetic type determined the treatment plan,” Sophie begins. “He had a lower risk genetic type, which meant that it would be four.

“The initial plan was ten days for rounds one and two, and then rounds three and four are slightly different, shorter but higher dose - they call it high dose chemo.”

A day later, Ralphie started round one of treatment.

“I remember him sitting in that bouncy chair, and he was all hooked up to the chemotherapy,” Sophie says, adding, “it’s bright blue, and it goes into his line.”

By day three, Ralphie seemed to be doing remarkably well. However, just a few days later, he became poorly, and treatment was briefly paused to see what was happening.

“It was late at night, and his eyes were rolling in the back of his head, and he was not responsive. It was really scary - I thought that was it, to be honest,” Sophie says.

Luckily, a range of tests and scans showed that Ralphie had just had “a bad reaction to something”, and he recovered after about a week.

“As much as it was frightening, [staff] were so quick at dealing with it, and he came out the other side ok,” Luke says.

The “hardest part” for Sophie and Luke after round one of Ralphie’s chemotherapy was waiting to find out whether it had worked.

“You can imagine the wait from having the bone marrow aspiration to getting the results,” Luke says. “I can’t remember whether it was four or five days of waiting, but as the days went on they became longer and longer, and we were worrying, 'why is it taking so long?'”

Luke remembers “as clear as water” the day Ralphie’s consultant visited them to tell them Ralphie’s test results.

“[She] walked through the door with a smile on her face, and it was so different to the day she told us about the AML. The first thing she said was, “Good news”.

Ralphie’s tests had shown no cancer cells detected.

“Our consultant did say to us that we [would] know a lot more after round two – they look at the first two rounds and see how the chemo is affecting the cancer cells,” Luke explains. “But luckily for us, after round two, he kept that negative result - it was just unbelievable that he’d done so well.”

Ralphie has now almost completed all rounds of chemotherapy. Over the last few months, Sophie and Luke have noticed a pattern during the treatment cycle.

“Every round, there’s a little dip after about ten days - he gets mucositis, he will get a bit of sickness, he goes off his milk,” Luke says, adding that he always bounces back.

In February 2023, Sophie and Luke realised that, together with Ralphie, they had been at GOSH for 100 days.

“We haven't gone home once. One of us would stay in accommodation or a hotel around the corner and we'd take it in turns each night. One night on, one night off,” Luke explains.

Despite the challenges of not being at home, they still manage to have fun at GOSH.

“We play music, we dance around, we get the nurses involved,” Luke says. “We don’t want to sit with an upset face. This is our journey, and this is how we’re dealing with it. He’s got to go through it, so let’s be happy that they’re doing something to save him...”

“Spending this much time on an oncology ward is very strange because you’re constantly reminded that there’s children here having treatment for cancer, but it’s actually a very good place to be,” Luke continues.

“The nurses and the doctors make it great; they make it comfortable to be here, basically. It’s a nice place to be, but we don’t want to be here.”

Having spent so much time at GOSH, Sophie and Luke think a Children’s Cancer Centre will make a big difference to families like their own.

“For children who need cancer treatment, I think it will be great because they’ll be in an environment where they feel safe and know that they’re getting the right treatment,” Luke begins.

“It’s going to be state of the art, it’s going to be brand new. So, if they have to have constant treatment ... it’s not a bad environment.

“They’ll have outdoor spaces, brand-new equipment in a brand-new ward. A brand-new building designed specifically for their health care.

“Having things all together, everything that you would need in terms of scanning equipment, everything in one building, would be fantastic. So hopefully that would make their journey through this an easier one.”

As well as helping patients, Luke and Sophie think new outdoor space will help parents, too.

“It’s so nice to get fresh air,” Luke says. “Imagine if there are some plant pots with a watering can? I like doing stuff like that. I would just go out there and water - something normal.”

Having a child with cancer has been daunting for Sophie and Luke.

“It’s not nice to associate your child with that word,” Luke says. “I mean, their life is just beginning. Especially Ralphie at three and a half weeks old, being told he’s got cancer. He’s had to fight for his life since he’s been born. If I could switch places with him, I would, but I can’t.”

While Sophie worries about cancer returning, she tries to take each day as it comes and enjoy every minute with her family.

“I still constantly have that horrible feeling in my gut about cancer coming back. I’m so petrified, but I just keep pushing that away. We’re going to take each day at a time, even when we’re home. Let’s just enjoy every minute of every day with him. That’s all we can do,” she says.

Luke thinks that Ralphie is going to be “a little superstar” in the future, known for being brave and strong.

“I think he’s going to have a bright future. I really do,” he says.

To everyone raising funds for the Children’s Cancer Centre, Luke and Sophie say a massive thank you.

“I know that once it’s built, all these children are going to get the best care,” Luke says. “To have something even better than it is already will be just fantastic. It’s something that we would like to do in the future - we would like to be on the other side of it and raising money.”