Theo's B-cell leukaemia story

The night sweats started

Theo was just a normal healthy three year-old boy when in May 2021 he developed an ear infection. After a visit to the GP, he was started on antibiotics and he perked up really quickly, but a week or so later he seemed poorly again. He would develop a fever but nothing would really come of it and within a matter of hours he would be right as rain again. The cycle of getting fevers continued over the next couple of weeks but then he began having night sweats. Theo has always been a sweaty child, especially at night but these sweats were different. They were drenching night sweats and on one particular night we had to change him, as well as all the bedding, three times as they were all completely soaked. The next day I went to see the GP. To look at Theo at this point you wouldn’t think much was wrong. He did have a few bruises and was a little pale but nothing to say he was seriously unwell but something told me he was. I told my GP about the night sweats and that although he looks well, I had a gut feeling something was wrong.

Thankfully my GP listened to my concerns and arranged for a blood test to be done. The blood test was arranged for three days later and during those three days, Theo started to show many more symptoms. Not only did the night sweats continue but he started to bruise very easily all over his body and also developed a few small petechiae spots (purple pin pricks under the skin that do not fade when pressed). He became tired easily and got a fever pretty much every day. Friday 9 July, just three weeks before turning four years old, we went for the blood test and within eight hours of having them done, a phone call from our GP changed our lives forever.

It’s every parent’s worst nightmare

The GP told us it was bad news and it looked like Theo had leukaemia. He said we needed to pack a bag and go to the hospital right away. It was every parent’s worst nightmare and didn’t feel real or possible. Leaving our older children at home (aged 19 and 17 at the time) was extremely hard. They had heard the phone call and knew what was going on but nobody had any idea what was going to happen next. COVID rules still applied in hospitals so when would they see Theo next and when would we see them? It was absolutely heart-breaking to leave them behind. We prayed we would arrive at the hospital and it all be a big mistake, but sadly that wasn’t the case. In fact, there was a team of doctors waiting for us to arrive and you could just tell by the look on their faces that it was bad news. Within minutes of arriving, they confirmed to us that Theo had B-cell acute lymphoblastic leukaemia and I’ll never get over that sick and numb feeling.

Beginning treatment

We stayed in our local hospital for four days so that Theo could be started on some medications and receive some blood transfusions and we were then moved on to hospital. Being a specialist cancer hospital, it’s a place that nobody wants to ever have to attend, certainly not for a child. Six days after diagnosis, Theo went to theatre for his central port to be fitted into his little body and begin his chemotherapy treatment. The consultants had explained everything to us and asked us to sign consent form after consent form for all the different chemotherapy treatments. There was so much to take in and it was so difficult to process all the information. It all felt like such a nightmare and the consent forms were the hardest forms we’ve ever had to sign.

Starting school whilst receiving chemotherapy

Theo was started on high dose steroids and so many other medications which did all start to take its toll on him, but after 16 days in the hospital he was finally allowed home. He gained so much weight from the steroids and his mobility had become very weak so he spent most days laying on the sofa as he couldn’t move very much. It was so hard to see so many changes in him. He went from being a happy, funny, boisterous little boy to being quiet, sad and angry at times as well as becoming so much larger in size due to the steroids and losing his hair. But after a couple of weeks settling in back at home, we started to get our little boy back. The steroid weight started to drop off and he was able to get up and about easier on his own.

For the first six months, Theo was receiving intensive chemotherapy treatment and it was really tough on us all. We would attend hospital appointments weekly and there was a lot of chemotherapy being given. We were told to not expect Theo to be able to do a great deal until after the six months was over but just two months in, Theo started school on the same day as the rest of his reception year group. Admittedly, he didn’t get to go to school very much in this time but to see him walk into the classroom alongside all the other little boys and girls was a proud moment. A moment we didn’t know if he would ever achieve. There was a lot of times when chemotherapy made things very hard for him, however, no matter how rough Theo was feeling, he just got on with. He never let it get to him, he smiled every day and he was definitely the one keeping us strong!

Looking to the future

In January 2022, we finally reached long term maintenance. We had a bumpy start with several hospital admissions but we are now a year on from diagnosis and things finally feel like they have started to settle down. Theo still has chemotherapy every day at home and attends the hospital once a month for IV chemotherapy and a five day course of steroids. He also has a lumber puncture done in theatre every three months and chemotherapy administered into his spine. We have an anxious couple of weeks after each lumber puncture as this is when they check for any returning cancer cells. Despite all the treatment Theo receives he never complains. He gets on with it every day and even managed to achieve a 50% attendance in his first year at school which was incredible. He started the school year with no hair at all and finished the year with a lovely mop of hair back on his head.

Theo will continue this schedule of treatment now for another two years until 2024 when he will be able to proudly ring the end of treatment bell. I’m sure we will forever live in fear. More so after treatment has ended, but for now we just take each day as it comes and pray, we never hear of relapse or that Theo has any long-term effects from the chemotherapy.

Theo the Hero

We are beyond grateful for all the care Theo has received and continues to receive. We are also so grateful to all of the amazing charities and our amazing families who are forever by our sides. But most of all, we are so grateful for our little boy and for the strength, determination and bravery that he has. He’s so incredible strong and most definitely our Theo the Hero. In the first year of treatment, we’ve managed to raise some money for various charities. We did a bucket collection and raffle during a Watford Ladies FC football match raising money for Children with Cancer UK, and Theo’s dad and brother also ran the Brighton Marathon earlier this year raising £2,500 for Momentum Children’s Charity. It is so important to us to raise awareness of this illness and we will most definitely be doing further events to help all the charities along the way as they have all helped us so much right from the very start.

Luisa, Theo’s mum, August 2022.