“A happy end to a hard story” – meet Ralphie
30 Mar 2023, 10 a.m.
The new Children’s Cancer Centre at GOSH will help children like Ralphie.
Soon after he was born in October 2022, his parents, Sophie and Luke, noticed a lump at the back of his head and purple markings – like bruises – on his body.
A few weeks later, Ralphie was diagnosed with a type of blood cancer called acute myeloid leukaemia (AML) at GOSH.
From there, he started intense treatment at the hospital.
Despite initially having a bad reaction to chemotherapy, Ralphie responded well to treatment and, after six months at GOSH, went home on Mother’s Day 2023.
Sophie and Luke tell us more about Ralphie and their GOSH experience.
Arriving at GOSH
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).
“Like your heart was being ripped out of your chest”
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?’”
Adopting a positive mindset
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 says. “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.”
Preparing for treatment
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 adds. “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.
“Good news” at last
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.”
100 days on an oncology ward
In February 2023, Sophie and Luke realised that, together with Ralphie, they had been at GOSH for 100 days.
“We didn’t go 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 recalls.
Despite the challenges of not being at home, they still managed 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.”
Home at last
After his 100-day milestone at GOSH, Ralphie continued to respond well to treatment. Eventually, Sophie and Luke were told he was well enough to leave GOSH.
“We were elated! Every emotion you can think of – happy, grateful – just a massive thank you to everyone who helped keep my son alive,” Luke says.
“We went home on Mother’s Day – Sophie was over the moon.
“Someone in our street had organised a welcome home party, so we were greeted with banners and champagne and hugs.
“The first thing we did was go in the house and Sophie, me and Ralphie had a massive cuddle, it was so lovely to be home after six months in the hospital.”
“It’s been so wonderful to be at home with Ralphie, he’s such a lovely boy – it’s a delight and a joy to be with him. After all we have been through, it’s perfect. To see how he is growing and thriving after all that worry - it couldn’t be better. It’s a happy end to a hard story.”
Hopes for the Children’s Cancer Centre
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.”
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.”