Posted on Wednesday 9 December 2020
Foxs story: “Cancer doesn’t care what day of the week it is”
Fox, 3, was diagnosed with cancer on Christmas Day last year after his Mum noticed red spots on the backs of his legs. After being transferred to Bristol Children’s Hospital, Fox had months of chemotherapy treatment before going into remission in November this year.
After a tough year, his family are looking forward to spending Christmas all together at a respite home in Cornwall, organised by Hugs for Henry. Fox’s parents do not want to be reminded of what happened last year by being at home but want to make the day magical for Fox and his twin sister.
Fox’s family are sharing their story this Christmas to help CLIC Sargent being light to other families in the darkest times.
“He’d had a second bout of tonsillitis in six weeks, he’d had one early November and then it came back again ten days before Christmas and he just didn’t respond to his medication like he did the first time. He got worse and worse, I did three trips to the doctors in a week and then a trip to the local hospital out of hours. His symptoms started to improve but he remained skinny and pale and he had not eaten all weekend and had a nasty infection.
“It was on Christmas Day after they got up and opened their presents, we’d had some breakfast and we were getting them dressed to take them to the park to go on their new scooters, I noticed he’d got red spots all over his legs and the kind that don’t go away when you push them. Naturally, I thought as he’d had a bad infection it was maybe meningitis or sepsis, so we took him back up to the hospital.
“They weren’t really sure, they took some bloods, we came home because bloods take two hours and we had our Christmas dinner later than we should have done but then we were called back up and they said his preliminary results weren’t good and that he had to have a blood transfusion. Again, they still didn’t know 100% why. We had to stay in overnight. An hour after that, the consultant took us off and said it was most likely leukaemia, and we’d have to stay over, he’d have to have a blood transfusion first thing Boxing Day morning and we’d be blue lighted to Bristol for proper diagnosis.
“That moment plays in my head over and over and over again. I remember she took us in to a room that we’d not been in, the ones with the sofa and tissues. She asked me to run through everything that had happened and then she looked straight at us and said ‘right it’s time for a serious conversation, do you want Fox to be here?’ and I was like why wouldn’t I want him to be here, that didn’t really cross my mind, I was a bit thrown by that. Then she said ‘looking at his blood work it’s most likely leukaemia’. That was it, from that point, you get sucked into this weird alternate universe nightmare.”
Tom and Holly then travelled by ambulance to Bristol Children’s Hospital with Fox, for him to have further tests. His twin sister, Winter, stayed at home with their grandparents.
“It’s always going to be hard whether you’ve got one child or seven children but you almost have to let them take a back seat, not forget about them but you don’t have the capacity. Judith and Peter stayed at ours Christmas night and they came to visit on Boxing Day and then she just went and stayed with them. The twins had never spent a night apart in their lives – for as much as they fight, they do have a really nice bond. They were sat together on his bed on Boxing Day, he was having his blood transfusion and she was feeding him fruit and it’s a really bittersweet moment.
“We were put in room 13, we didn’t arrive there until late afternoon. It was Boxing Day, so I feel like our Christmas had been ruined. It’s never a good time for it to happen but it seemed really bizarre but then you arrive there and you realise I’m in a room in a ward full of children who have been here for Christmas, for the run up to Christmas, this is their life and we’re new to this.
“We settled in Boxing Day evening and then they were giving him transfusions and blood through the night. The consultants came and spoke to us and said we can see a lot from the blood but we don’t know properly until he’s had a bone marrow biopsy, which is surgery and because of the type of cancer we found out he had, it diminishes your platelets and the biggest issue is haemorrhaging blood, so they didn’t want to risk surgery too soon until they had his blood work, which was a limbo because there’s a tiny bit of you that thinks maybe they got it wrong, maybe this isn’t happening, maybe we are going to wake up.
“He did have his biopsy on the Friday I think and they came back and they said it was definitely AML, I’d read up on it, so I had a little bit of an idea but she said from the look of things he has a ridiculously rare sub-type. They had to run genetic testing on it before they could 100% say what it was, and asked the team to do it over the weekend. She gave us a brief idea of what would happen if it was that type; what type of medication he would be having and general protocol but she couldn’t confirm anything until she had the results back.”
A couple of days later the consultant came in to tell them Fox had a rare type so would need a particular type of treatment, which they could not administer in Plymouth. Fox, Tom and Holly then stayed in Bristol for weeks until they went home for the first time in March.
“We arrived on Boxing Day midday and by the next day we had keys to a room in a Home from Home. We didn’t have time to think about where we were going to live, how we were going to pay our mortgage or about work, it didn’t cross your mind and these are the stresses you don’t need to worry about, that was taken care of straight away. We were given those keys on the 27th and we handed them back nine or ten weeks later. It was a long old slog being in there and on the ward.
“I cannot in my mind imagine what we would have done if it wasn’t there, it would have cost us a small fortune, paying a mortgage for a house we’re not living in and having to pay for somewhere, I don’t know what we would have done. You’d occasionally see other families about, I made friends with one of the mums we were opposite each other for a period of time, she was there for me and I was there for her. It felt, for a big house, really homely, really cosy and I felt really safe there. They gave us parking permits so we didn’t have to worry about where we were going to park the car.
“They had a Christmas grotto set up for the kids. Cancer doesn’t care what day of the week it is, it doesn’t care how old you are, why should it stop children having a nice Christmas because it is all about kids isn’t it, it’s the magic of Christmas and they deserve to have a nice time whether they’re sick or not – it was heart-warming to see all the decorations up and the Santa’s grotto and all the free food around.”
Fox’s family were able to go home for the first time in March, just as the country went into lockdown.
“We got home early March and then we went into consolidation for 28 weeks – his ATRA was two weeks on, two weeks off, then his Arsenic was four weeks on, four weeks off. This was in lockdown, we had been staying with CLIC but at that point rightly so that couldn’t happen so we were driving to Bristol and back in a day twice a week which was pretty horrendous. Any parent will tell you that sitting on a paediatric oncology all day is emotionally draining and then you add four or five hours of driving on top of that is just exhausting and because of the lockdown only one of us could go at a time, so we had to do it on our own.
“Lockdown begins the minute you get that diagnosis, you go into an alternate universe where you’re not seeing people like you would be seeing people and you do become obsessed with cleanliness and risk of infection and minimising stuff like that but then to go into not being able to see anyone at all when it’s the time of your life you need support more than ever, it’s really unfair. It’s a really lonely experience – all the driving on your own, not being able to spend time with other people.”
Before lockdown, Holly and Tom had been able to mix with other parents and really benefitted from talking to them and sharing experiences.
“I made friends for life, because it’s a weird bond you make with these people you don’t know them, you don’t know where they live, you don’t know their surname, you don’t know what they do for a living but you share this profound fear and you’re going through this journey. I don’t have any friends whose children had gone through this. You have this connection and you know how each other are feeling without even knowing much about them and it’s a connection you can never come across with another person. People were really friendly, despite what they were going through.”
As well as being able to stay at the Home from Home, Fox’s parents were supported by their CLIC Sargent social worker.
“Lin our social worker gave us forms so we’d get grants to pay for travel which massively helped, because it’s not cheap and there’s no way around it. Tom and I are both self-employed, we can’t just not both work – luckily Tom could work on his computer remotely but he wasn’t in the right state of mind. She told us what grants and benefits we’re entitled to, she’d come and tap on the door and say ‘can you sign this’ she’d go away and a few days later some money would appear in my account or when I had to fill out the endlessly long form to get disability allowance she filled it out for me because I didn’t have the brain capacity to do that.
“Even just stopping in for a chat – you’re just completely lost. The nurses do his chemo, the surgeons do the surgery, the consultants work out his treatment plan and as much as they say ‘we’re here if you need us’, they’re job is to look after fox but CLIC looked after me and Tom and we can’t thank them enough for that as it just takes the pressure off at that hard time.”
Now, Fox is at home and in remission his family are looking forward to spending Christmas all together.
They have decided to spend the festive period in a respite home, so they can enjoy the time together away from the memories of last year.
“I have to be excited and I have to be strong for the children because they shouldn’t be robbed of another Christmas like they were last year. Last year was the first year they really understood and even now they can tell you exactly what they got in their stocking last year, they were really excited about it and we made a lot more effort because for their first Christmas they don’t know what’s going on, it’s just another day for them but that one was really important and it got cut short.
“Actually because of the bad memories of last year, I can’t be in the house – I can’t contemplate being in the house – so we’re going to a respite house in Cornwall (Hugs from Henry) and we’re going to stay there for Christmas. That way we can still celebrate it but somewhere different and it will be all about them. They’re really looking forward to it and they don’t stop going on about going to the Christmas house – is santa going to be able to get in? We’ve managed to find something alternative to do which is fun for them but not traumatic for me. I’m really apprehensive about it, it’s going to bring back a lot of bad memories – but not being in our house and just trying to remember how far we’ve come from last year and yes it was horrendous, but he’s alive and he’s well.”