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Meet Sophie Sutton and hear about her extraordinary story
I was pregnant with my first child in 2017 and thought I had morning sickness. I was a fairly fit, healthy, slim woman and my bump wasn’t that big in June 2017 when I was just about halfway through my pregnancy, but the symptoms just wouldn’t go away.
I had shortness of breath where I’d wake up first thing in the morning gasping for breath. I thought this might have been due to the hot weather. The midwife also told me that I had a long baby pushing on my diaphragm which could be causing this. In hindsight, I had awful bruising that I just chalked up to me knocking myself. I’d really struggle to walk into work in the morning and I remember thinking, “Why is this happening? I’m fit and healthy.” Having never been pregnant before I was assuming that what I was experiencing was just regular pregnancy. However, I had a few friends who were also pregnant at the time and they weren’t struggling, and I was left thinking, “Am I being over the top here?” I would get in from work and just collapse on the sofa and go straight to sleep. My husband noticed and thought that it wasn’t great.
So, I decided to go see my midwife who thought I just had really bad morning sickness which was eventually going to ease. But by this point this had been going on for a while now and my mum felt like something wasn’t right, so my midwife forwarded me onto my GP. He was amazing, felt my pulse and thought my heart rate was ridiculously fast and was worried I had a blood clot on my chest, so booked me in for a scan at the hospital. He wouldn’t let me drive home so my husband had to come pick me up and take me to the hospital. At this point, I did not think for one minute that it was blood cancer, thinking it was probably a blood clot or pneumonia.
After the scan they could see something on my chest but weren’t sure what it was, so I was on the respiratory ward and they decided they were going to give me a biopsy on my chest. At this point I was still pretty relaxed; my husband had popped home to get me an overnight bag but a respiratory doctor came round to my bed, looking like he was about to cry and delivered the news that: “Unfortunately we think you’ve got leukaemia.”
Obviously I was pregnant, so they were unsure how they were going to treat me, but they put me in an ambulance and sent me to the oncology centre in Bristol. That’s where things went a bit crazy really. They had lots of meetings with the neonatal doctors and the haematologists and it was decided that I would start chemotherapy and a course of steroids immediately with a specific set of drugs that they were confident (using previous patients as evidence) that the chemotherapy molecules would be too big to pass through the placenta. They were confident that it wouldn’t harm the baby but my haematologist stressed to me that they had to do this, so I agreed.
I responded to it surprisingly well, but the more they investigated, they realized I had T-cell acute lymphoblastic leukaemia (T-ALL), a more complex variety of ALL, so it was decided that a bone marrow transplant would be needed. I had to have my son, Freddie, two months early via a C-section (after the first two rounds of chemo) and he stayed in NICU for the next two months while I was down in the haematology ward being prepared for the transplant. Every day after chemo I would drag myself up to be at his bedside and do what I could for him, feeling absolutely horrendous but I had to do it. Knowing that my baby needed me kept me strong through the whole process, but it was an incredibly tough time. He definitely pulled me through. I was diagnosed in June 2017 and had my transplant on the 3rd November 2017.
Now I am nearly three years post-transplant and I have to say that I am feeling pretty good—I am back to work and doing regular exercise. I still suffer with side effects such as, fatigue and have been forced into early menopause as a result of the chemotherapy and TBI, but overall I am in a good place and feel extremely grateful for that. Although I’m currently free of cancer I do think about it most days and the changes I have had to make as a result of it, I am hoping things will get easier as the years go by.
Meet Josh, Sophie’s husband, who shares his experience of Sophie’s symptoms and diagnosis below
“Sophie was in pieces, she had just been told she was likely to have leukaemia and it hit me like a tonne of bricks.”
Josh Sutton’s wife Sophie was diagnosed with leukaemia at six months pregnant and he found himself having to deal with looking after his sick wife and a baby as well as juggling a demanding job. Here’s his amazing story.
“I’m Josh, from Bristol, and my wife Sophie was diagnosed with leukaemia when she was six months pregnant. Her symptoms were quite severe but nothing out of the ordinary, we thought, to the first trimester of pregnancy. The difference being that for Sophie they kept on going and going. At the time we had quite a few friends who were pregnant and they all had quite similar symptoms but quite quickly were getting back to normal and just carrying on their lives being pregnant, whilst Sophie was still having the sleepless nights and was pretty sweaty, feeling sick a lot of the time and having absolutely zero energy.
I sat at my desk and I got a phone call from Sophie saying the doctor thinks she has a blood clot and has to go to hospital. I thought, ok, blood clot, there’s nothing out of the ordinary with that for pregnancies either – a bit of medication and away it goes but the doctor said she couldn’t travel to hospital alone so I made my excuses at work and off we went. I then went home to get some overnight clothes and got back all cheery and popped my head round and said I am back, and Sophie was in pieces, she had just been told she was likely to have leukaemia and it hit me like a tonne of bricks. It was a huge gush of emotion, that ‘Jesus we are in a serious situation here’. I decided that I was going to learn everything I could about it. I was going to know what she had, what treatment she had to have, what possibilities there were good and bad and then also how that would affect our son Freddie.
I had two weeks off when Sophie was first diagnosed and the first part of the treatment went well. During the pregnancy there were not many side effects with the chemo and no side effects to the baby at all as the molecules couldn’t penetrate into the womb -so that was great. There was no hair loss and vomiting, even though she was pregnant. Maybe that helped the way we handled the whole thing. Then came the day that Freddie was born.
Everybody says it is the best day of your life but for me, while it was the best day. He was two months premature and born by C-section so it was also the most terrifying day of my life. I honestly didn’t know if I was going to see Sophie again or our son. I was worried sick. I didn’t actually get to see Freddie once he was born as he was whisked off he went into his little incubating unit, save for one photo with him. The next time we saw him was at 2am the next day as we were waiting for Sophie to recover. He was two months early and after all he and Sophie had been through I knew at that point that he was a survivor. We decided that while Freddie and Sophie were being cared for at hospital I would continue to work as there was no reason for me taking paternity leave while they had a team around them. So, I carried on working and my days were very stressful, getting up in the morning, go to work, finishing work, driving down and see Freddie for an hour and then walking down to see Sophie, have a microwave meal with her and then going back to ICU to sit with Freddie until about 2am in the morning before driving home having a couple of hours sleep and going to work again doing my job. So not a lot of sleep, worrying about the pair of them and also having to focus on doing my technical job. At the time I just got on with everything really. I didn’t have time to show any emotion or ask for help at that time. It wasn’t a thought of mine to look for help, I was just getting on with everything. I didn’t let these thoughts cloud what I was doing.
Later on when Sophie was going through her transplant they gave me three months off as Sophie was recovering and Freddie needed looking after. When it came to it the owner of the company let me have the time off, so I could look after Freddie up until after Christmas and then they let me go back part time for the first two months. Sophie lost so much weight and had no energy the first month but then she started getting stronger and I was able to go back to work full time. It wasn’t until we had the transplant and the drugs started doing their thing to fight the cancer that she rapidly downhill. She went down to seven stone. There was hair loss so I sat in the kitchen and shaved off all her hair. She looked so unwell and had no energy. One day she was sitting on the bed shaking uncontrollably. It was hard for me to see her go through that. It was strange because I knew what was to come, but until you are in it, you realise it is the drugs that make you feel unwell but they are actually making you better.
It was hard to juggle with Sophie being so ill and living with a newborn, learning how to get him to sleep and change his nappy and being a full-time carer to them both. As a new dad, managing that and learning the ropes as I went along with no help was hard. I should have accepted more help but the bond that I have with Freddie is phenomenal. I had every day with him for six months. It is hard being a new dad, but I don’t know what it is like to be a dad without this, so that is it. Maybe if I had another child I could compare, but at the time I just got on and did it. I knew Sophie had to get on with it and so I did too.”