We hinted in our last interview with Carlisle boss Chris Beech that he and his family have a real insight into what prolonged and regular lockdowns can mean with Brandon, Chris’s 17-year-old son, a veteran of such requirements due to a rare form of cystic fibrosis, a genetic disorder which primarily affects the lungs.
Brandon’s condition has seen him undergo specialist treatment for many years, often in isolation, and Chris revealed this week that he has chosen to take on many of the tasks involved with treating the condition within the home environment, with the added complication of his patient being a typical teenage boy – now a young man – who often feels he knows what’s best.
And haven’t so many of us been there before!
Picking up the story, Chris said: “Looking back to that Monday morning when I had the lads in for training, just after the Grimsby game had been postponed, I think I mentioned that we had quite a long chat with the group about what we were planning to do at that time.
“Being honest, I don’t think a lot of them understood where I was coming from, because they all had their own concerns and worries about what was going on, and rightly so.
“What they perhaps didn’t get was that I’ve had a heck of a lot of experience with this kind of thing because of my son Brandon, and what he’s been through with his cystic fibrosis treatments over the years.
“I’ve seen first-hand when and how the medical specialists escalate things, and how quickly that sometimes kicks in, because they don’t take any unnecessary risks at all. So, when you bear in mind that Brandon is in a high-risk group, back at that time, on that Monday morning, we still hadn’t received any kind of warning for him from the medical staff who watch over him so closely.”
“We’ve learned over the years not to jump ahead of ourselves,” he continued. “We’ve learned to wait for those who are best placed to advise us to do just that. That’s why I was comfortable with getting the group together for that training session.
“I think we're all now seeing that the best advice is coming from the medical experts, and it’s wonderful for us to see the amount of pride the country has for its NHS workers and staff, because that’s something we’ve had as a family for so many years now.
“They really do know what they’re doing, and they do it so well. That’s not just the doctors and nurses on the frontline, who deserve every accolade they get by the way, because there are so many layers behind them that make the whole thing work so well.
“You’ve got carers, home carers, porters, hospital cleaners, admin staff, drivers, ambulance drivers, logistical folk. Beyond that, at the moment, we have the police, the military, people in shops, delivery people, gas and electric people – the list really is endless – of people who are now part of one big machine that’s doing its best to keep us all going. We should be proud of that, and so should they.
“Obviously what we’re talking about here is the NHS specifically, and having been so closely involved with them with Brandon I can honestly say that I’ve never heard anyone have a bad word for them through all the years they’ve been looking after us.
“That pride everyone is feeling for them now, we’ve always had that for them in the Beech house. Sometimes we’ve had to wait for certain things, and that’s caused us anxiety as we’ve watched our lad battle his condition, but there’s always been a reason for that, and they’ve always done their utmost to make him better through it.”
Looking back to when Brandon was first diagnosed, he said: “It was frightening, I don’t mind admitting that. He was my little boy, he still is, though he won’t like me saying that now he’s 17, and no parent wants their child to face any kind of challenge like that.
“We lived in Chorley, and initially I had to stay for two weeks out of every three months in Preston Royal Infirmary with him, on a treatment cycle. He needed IVs to help with his lung function, because it drops quite significantly at times, and that meant living in the hospital while he got that.
“I basically lived on ward 8 for a fortnight at a time when he was in and, in fact, I’m hoping the Carlisle fans can help me here. It’s so long ago that I’ve forgotten the name of one of Brandon’s nurses, who was an absolutely fantastic lad.
“The ward was otherwise looked after by female nurses, so he took Brandon under his wing a little bit. The coincidence here is that he was a Carlisle United fan, and I seem to remember him saying that his son was in Carlisle’s centre of excellence.
“It’d be lovely if he reads this if he got in touch with the club or, if anyone knows of him, tell him to get in touch and we can say hello and thank you to him once again.”
One of the knock-on effects of cystic fibrosis can be an interruption to the correct function of the liver and other vital organs and, just over six years ago, Brandon’s condition deteriorated quickly, with the family and medical staff put on high alert as he suddenly became quite ill.
“Straight away you could see he wasn’t right,” Chris explained. “The specialists knew it was his liver and he was put on the donor list immediately. It really was that serious.
“The amazing thing for us was that just eight hours after being placed on the list we got the call to get ready for the operation. That was on April Fool’s Day, so this time last week was the sixth anniversary of his transplant operation.
“What we have to remember from that day is that our good fortune, which we are eternally grateful for, was real and extremely sad misfortune for another family. They lost a boy who was 14, and with Brandon being 12 it was a near-perfect match. We can’t say thank you enough, but that’s without knowing if they are even the right words to say.
“We were quickly transported to Leeds hospital which, along with Birmingham and London, is one of the leading liver centres in the country. From getting the call we knew we had a three-hour window during which time we had to be there and, of course, as is nearly always the case with such things, it was the middle of the night.
“As we were heading over we knew that there was still a chance that the doctors could do an assessment, or the surgeons could take a look and decide it wasn’t a match after all, and the whole thing would be off. That was a worry, you have to be aware of it, but we just had our fingers and everything else crossed that it would go ahead.
“All of those fears were put aside when we got to Leeds and he was whisked away to undergo a 10-hour operation, which was the longest 10-hour period of my life. From the operating room he was put in intensive care for three days and he then had an isolation period of three months.
“He was ‘shielded’ to help the liver take to his body, and that’s pretty much what those who have been identified as being vulnerable are going through now, as part of the fight against this virus.
“Brandon is obviously one of those people, and for him it means that I can’t touch him as I take care of him for this three-month period, which he’s probably quite pleased about, to be fair!”
As you can see from the actual picture of Brandon’s liver below, compared to the image of a normal organ, the damage was such that even the surgeons were surprised to see its condition when they carried out the transplant operation.
“His liver had malfunctioned so badly that they sent it away for research to be done on it afterwards,” he told us. “We were told it was going to be used to teach young doctors and as a learning tool, so they could see what kind of other impact and problems cystic fibrosis can bring to the body.
“Cystic fibrosis itself is a defect, and it’s somewhere in the region of one in every 24 people who carry the gene. If both you and your partner carry it you have a one in four chance of passing it on to the baby, and there is then a one in four chance of that baby being a carrier, and having the condition, or a one in two chance of not having the condition or being a carrier.
“With odds like that you can see that it actually doesn’t follow any rules. It breaks family trees and it could just disappear or, as with Brandon, it can manifest itself in a rare and complicated type of the condition.
“It’s actually been a big year for cystic fibrosis sufferers this year because they’ve brought out a new treatment for people like Brandon who’ve got the complicated version of the condition.
“It costs just over £100,000 a year for this treatment, and quite a few people are excited about it, but this kind of triple-therapy treatment, which Brandon needs, hasn’t been tested yet on transplant patients.”
“With all of this, I think it goes without saying that there is absolutely no way Brandon can catch this Coronavirus,” he commented. “That brings me back to what I said originally about being comfortable with getting the lads in for training, because I’ve been guided all along on this situation by Leeds hospital, long before the government even started to issue their briefings.
“During the weekend of the Grimsby cancellation Leeds hadn’t been in touch with us at all. They hadn’t told us to isolate or shield Brandon, or anything like that, and they really are second to none on dealing with this type of thing.
“I have to thank the NHS and every key worker once again. They just keep doing shift after shift, long hours, and it’s second nature for them to go above and beyond as they help people. That’s their normal work anyway, but it’s even more the case now.”
We’ll have more from the manager later this week on how Brandon has to stick to a strict regime through these lockdown periods as he continues to fight this disease.