My Son Has Leukaemia

Interview with Mummy Social’s founder, Josie – April 2018

For anyone who hasn’t been following your story, can you take us back to the day you found out Dexter was ill? At what point did alarm bells start ringing?
It was a Saturday morning and Dexter hadn’t woken up at the normal time. I went to check on him, putting on the light and pulling back the covers and I found he had a rash on his chest which didn’t go away when I put a glass on it. He seemed fine in himself, so I wasn’t panicking, but I phoned 111 who, after asking a few questions asked me to hold then came back on the line saying that an ambulance was coming. He had been sent home from school the day before with a sore throat and a bit of a temperature but otherwise he was fine! I was on my own with the three kids so kept myself busy getting them ready while telling myself all would be fine… little did I know what was ahead of us.

On arriving at the hospital, we were taken straight into a room where consultants immediately came to check him over, deciding to do blood tests and give him some precautionary antibiotics while they investigated. He was put on a bed surrounded by machines and while no one said, ‘this could be serious’, I felt things kick up a notch. There were more and more doctors coming to see him, working at speed to attach more wires and inserting more needles and I realised Dex wasn’t even reacting. The rash was spreading and he was becoming more and more sleepy. By this stage I was struggling to stay calm, I could feel panic rising and I asked my parents to come in.

I noticed one of the consultants taking a phone call and heard him say, ‘the family are behind me so they will be aware of this call.’ I walked straight up to him, he turned around and he said, ‘His blood counts are very wrong. I don’t know why this is yet but it’s something serious, you need to get his dad to fly home now.’ My stomach dropped and I knew this was bad. He was quickly moved into an intensive care room and given a blood transfusion and a platelets transfusion while he slept. Calling Andy to say, ‘You need to come home, something is really wrong,’ was awful as it made the potential severity of the situation feel very real.

It was only a few hours after arriving that the consultant then asked me to go into another room with him. A nurse followed and I remember thinking ‘she’s here to comfort me when they tell me what’s wrong.’ I said to my mum, ‘This is bad, isn’t it?’ and she replied, ‘Yes, I think it is.’ He sat me down and said, ‘I’m really sorry, this is probably going to be one of the worst bits of news you are ever going to have. Dexter has leukaemia.’

I remember spotting a sink in the corner and thinking that if I was going to be sick, I should be sick in the sink. The consultant, sitting opposite, said, ‘Look at me – it’s a long, hard road ahead but we are going to be with you every step of the way and we will get your little boy better.’

From that point on it was all systems go. Andy made it back from the North Sea off the coast of Belgium by 10pm and we spent the next two days in Exeter hospital before being transferred to Bristol Children’s Hospital to begin the treatment, where we stayed for two weeks. I really can’t put into words how hard those early days were and just thinking about it now makes me well up. That first night, Dex said, ‘Mummy I’m feeling better now, can we go home please?’ It broke my heart knowing what he was about to go through.

You are facing what many have described as ‘every parent’s worst nightmare.’ What was running through your mind when you first heard the L word?
It was pure terror. Words I never thought I would hear. It was surreal and terrifying, and the worse-case scenario did enter my head. Hearing that there is a 90% survival rate still means there’s 10% who don’t make it. What if Dexter is going to be one of those? I never thought we would be in a situation like this, one of the absolute worst things was now happening to us – what if it just kept getting worse?

It took a lot of strength to keep it together as much as possible; to think straight so I could support what the doctors needed to do and support my son. Everything happened so quickly, x-rays needed to be done immediately, cannulas needed to put in and Dex needed me to hold him tight and stay calm. Inside I was in bits and every now and again had to go outside to sob against a wall before taking a deep breath and going back in with him.

How much does Dex understand about his illness and how did you decide what you would tell him?
Him only being four has turned out to be a blessing. He has no idea of the connotations around the word Cancer or any real appreciation of how tough this is going to be. We’ve kept it as simple as possible for him by telling him that his blood is very poorly and if we don’t let the doctors fix it he will become really ill so we need to let them do what they need to do and that this will take a long time.

Unfortunately, he quickly started asking us, ‘Is anything to go to hurt today?’ which was just heartbreaking. We have promised him that we will tell him exactly what’s happening and what it will feel like.

He gets anxious about procedures and totally shuts off from us until everything is done, he just wants holding. But he hasn’t said no or kicked up a fuss at all, and he’s getting more at ease with going to hospital. He’s actually been amazing and so much braver than I could ever be, we really are so proud of him! 12 weeks in and he’s now watching all the injections and we’ve started ‘confidence coins’ where he gets a coin when he talks to the nurses. It’s worked amazingly well and we took him to buy his first toy the other day. He’s started playing doctors with his sister and bosses her around telling her with extreme accuracy what happens. He knows too much for a 4-year-old!

You’ve been very honest on social media about how tough the next few months (and beyond) are likely to be. What’s been the toughest moment so far?
There was a moment early on, when I had to sign the first consent form for my baby boy to be treated for leukaemia, which I found particularly tough. It was only about 72 hours after that sore throat and there we were, in a hospital miles away from home, on a ward for children with cancer, signing a form to say he would start with an operation to put in a port*, have bone marrow taken and chemo injected into his spine. It just made it so real. I signed it with tears rolling down my cheeks. [*A port is a circular device that sits under the skin with a tube coming from it which goes into a large vein in the neck, it’s accessed via needle going through the skin into the port. Chemotherapy can then be given or blood can be taken].

Then there are the obvious moments including his tears and screaming, the memories of which I’m hoping will soon fade! The worst was soon after having his operation to put in his port, he fainted and his temperature started soaring. He needed emergency antibiotics but the port wasn’t working so they had to remove the dressing (which was stuck on with some sort of medical super glue!) and re-pierce the freshly operated on skin. The entire time he was sobbing and asking me, ‘Mummy, is nearly over yet?’ and when they took the needle which goes through his skin into the port out, and then re-pierced it, the blood curdling scream and look of terror in his eyes was just hideous.

During the early weeks when you’re still in such shock, you really have to grit your teeth, box up all the emotions and try and be the happiest mum you can be. It goes against all your instincts to be walking your child towards something that’s going to cause them pain, and in the early days the trepidation of what was going to happen and waiting to see the side effects kick in was hard going.

On the up-side, it’s not all bad, we’ve seen incredible kindness and expertise from the NHS teams, their knowledge and understanding is just amazing and we feel in extremely safe hands – we honestly couldn’t ask for more from them. And yes it is shit, but it’s not all shit – we are getting through it and we are ok – so if you ever get the same news as us, you will be ok!

How has the intense treatment schedule impacted Dex’s two younger sisters and your family life more generally?
His treatment won’t finish until the 20th of March 2021, when he’ll be nearly 8! It’s these first 7 months that are the most intensive, consisting of 5 phases that all contain different treatment days and a different mix of drugs which are administered orally, through his port, by injection and by lumbar puncture. On writing this we are only 12 weeks in yet he’s already had 5 blood transfusions, 3 platelet transfusions, 7 general anaesthetics, an operation to put in a port, 2 lots of bone marrow taken, 2 doses of chemo injected into his leg, 6 lumbar punctures to inject chemo into his spinal fluid, 6 doses of chemo by a drip, 6 weeks of steroids, 6 weeks of daily oral chemo, countless blood tests and over 50 doses of other medications.

Even when he’s out of these first intense 7 months he’ll be having oral chemo every single day, weekly blood tests and a lumbar puncture every 12 weeks until that golden end date. So, for a family it’s definitely has an impact!

Luckily the baby has been easy while in hospital but I’m planning on putting her on a bottle soon so that I can leave her when we need to go in frequently (some weeks you aren’t in hospital at all, others you are in every day) and for our 3-year-old daughter, she certainly has been shipped off to friends and family a lot! There have been moments of her screaming for mummy while being driven off but we are all starting to settle into the swing of things a bit more now.

One of the hardest parts of this so far has been the side effects. One of the chemotherapies affects the nerves and causes muscle wastage so some days he hasn’t been able to walk at all and the pain in his legs has been really bad. The lumbar punctures have caused such bad headaches he’s been in tears and the steroids turned him into a child I honestly wouldn’t have recognised, both physically and personality-wise, which was incredibly hard.

Your story has made a huge impression online with many people desperately seeking ways to help. Can you tell us more about #Donate4Dex and the ways people can get involved?

1. Donate Blood. If Dex can cope with the amount of needles he’s had to have, than you can cope with giving blood! Each donation can save up to 3 lives, and it’s saved his.

2. Get the T-Shirt. Oh Arthur are selling t-shirts featuring a picture that Dex drew while in hospital, of himself with no hair, standing under a rainbow with his sister. All proceeds go to CLIC Sargent.

3. Make a Donation. All donations from Dexter’s Just Giving page go to CLIC Sargent, a wonderful charity who make the cancer journey a little bit easier for kids and their families.

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