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mom meets her son s donor
After Rupert Cross, now 11, was diagnosed with a rare blood disorder at age seven, his parents Holly, and Toby, were told his best chance of survival was a bone marrow transplant. Said transplant was provided by Billy Higgins, who had joined the Anthony Nolan bone marrow register three years earlier in a bid to woo his now wife, Kate.
Following the transplant in mid-2016 and an 88 day stay in hospital isolation while he recovered, Rupert is now the picture of health.
And in November 2018, both remarkable families met in person for the first time – becoming firm friends.
“Transplant rules state that you can't have direct contact with your donor for two years after the transplant," Holly said. “So, two years to the day, I contacted Anthony Nolan, the charity that had helped facilitate it, and asked if we could be put in touch."
“A day or so later, I got a reply with Rupert's donor's details and name. As soon as I saw the name – Billy Higgins – I just started crying. It was amazing to know who he was," She added. “I thought for hours and hours about what to say. How can you ever thank the person who saved your child? Meeting him in person was amazing, too. He is such a selfless, incredible person. Rupert now has his whole life ahead of him – and it's all thanks to Billy."
As a kid, Rupert was perfectly healthy, showing no signs of the ordeal that was to come until late 2015, when he started to develop mysterious headaches.
Holly, who has another son took him to the doctor, just to be on the safe side.
A blood test showed abnormalities in his white blood cell count, leading to further tests and a referral to the more specialist Great Ormond Street Hospital in central London, where he was officially diagnosed with a rare blood disorder called myelodysplasia with monosomy seven.
“We were told it was essentially pre-leukaemia," said Holly. “Apparently we had caught it early, but if it had been left, it could have developed into leukaemia. It was so shocking. Rupert had had his off days, but he'd seemed relatively well. He never even had a day off school."
In April 2016, the family were told that Rupert would need a bone marrow transplant – neither Holly nor Toby were a close enough match to donate.
Thankfully, help soon arrived in the form of Billy. Around three years earlier, he had fallen for a woman at work – Kate – and when he saw her queuing to join the donor register at an Anthony Nolan charity stand, he joined to impress her.
But, when the call came asking him to donate, he did not hesitate to agree.
Rupert needed high-dose chemotherapy to kill the cells affected by the myelodysplasia.
“Rupert had just turned eight at the time – he was so young. We tried to make hospital as fun as we could for him. He had an iPad with him, and we let him have whatever treats he wanted to eat," Holly recalled.
“But once the side-effects of the chemo hit, it was hard. He felt utterly lousy, sleeping all the time and being violently sick," she continued. “One of the worst parts was seeing him lose his hair, which happened very quickly. I was in bed with him one day and noticed clumps all over his pillow. I subtly tried to scoop it all into a pillow case. He wouldn't have known what I was doing – he just thought I was stroking his head. But he caught sight of himself in the taps later that day when he took a bath."
“He just said, 'I've got no hair. I'm ugly.' It broke my heart," Holly continued. “To him, it was huge but in reality, losing his hair was just one of the many things that he was going through – it's just that's the one people can see."
The transplant itself, was relatively straightforward, taking around four hours in total.
“Rupert slept right through it. I remember seeing that magic bag of red bone marrow arrive and being filled with relief. Finally, the thing we had waited so long for was there," she added.
It involves having a course of injections to stimulate the bone marrow, before it is collected through a needle, which stays in the arm for around five hours.
Billy's donations are made by taking cells from the bone marrow in a person's pelvis, which requires general anesthetic.
Even after Billy's donation, Rupert faced an uphill struggle when he was hit by a post-transplant complication called graft versus host disease, when the donated cells and the recipient's cells attack each other.
He also developed a phobia of swallowing medicine, leading to his drugs being administered via a PEG tube and Hickman line – devices used to feed medication directly into his stomach and heart respectively.
“It felt like two steps forward, one step back," said Holly. “Poor Rupert even developed steroid-induced diabetes due to the medication he was taking, which meant even more tests and injections. Thankfully, that eventually went away when he came off the steroids, and after 88 days, during which time I had to be away from Hector for seven weeks, we were allowed home. Still, we weren't out of the woods, though. We had to keep everything spotless, to lessen the risk of Rupert getting an infection. He couldn't go out in public much at first, or be around crowds."
With regular blood tests monitoring his progress, Rupert gradually began to grow stronger.
And in the summer of 2018, the two-year mark had passed, meaning Holly could finally contact the stranger who had saved her son.
“I had no idea where to start. How do you make someone realize just how great a thing they have done? It was a really surreal situation. It was almost like loving someone you've never met – I was that grateful," she said about the first time she wrote to Billy.
“I also didn't want to be too gushy and put him off replying to me, but I thanked him from the bottom of my heart," she added.
Billy replied, and from there, the pair exchanged messages, getting to know each other. Then, in November 2018, they met in person at Holly's local pub.
“It was absolutely amazing to see him," she said. “We met Kate, too, which was lovely. All I wanted to do was give him a hug, which is a strange thing to think about someone you've never met before."
“We had lunch together and talked about our lives," Holly recalled. “I wanted to give Billy a present, too, and thought for hours about what that should be. Rupert also made him a little Lego model of him and Kate on their wedding day, as before we had met, we'd only seen wedding pictures of them. Lego was one of the things that kept him busy in hospital, so that was very touching."
“Joining the register is an absolutely amazing thing to do and it takes no time at all to sign up. You can literally save a life while you're still here yourself. Why wouldn't you want to do that?" Holly said. “I have been on the donor register for years myself, so it did bring me comfort in my hour of need knowing I'd be prepared to do this for someone else if I needed to. I'd encourage people to read into it and make sure they know what they are signing up for and what's involved in donation, as there are misconceptions about it being really painful, intrusive surgery, which it isn't. But thanks to Billy making that decision to sign up, Rupert is a perfectly healthy little boy again, and we, as a family, now have a lifelong friend."
“I'd like to think I would have signed up to Anthony Nolan anyway, but it was one of those things I'd kept meaning to do for a while," Billy recalled. “Then, they came to my work one day and I noticed Kate in the queue. I wanted to impress her so joined too, without realizing what I was queuing for."
“The Anthony Nolan people talked me through it, and I was more than happy to sign up. I never really thought I'd get that call, but as soon as I did, there was no doubt in my mind that I would help," he continued. “It's been so lovely getting to know Holly and the family. Having seen pictures of Rupert from when he was sick, the difference in him now is remarkable. In the grand scheme of things, what I did was minor – Rupert is the real fighter, and Anthony Nolan and all the other people behind the scenes are heroes too."