Reggie's Acute Lymphoblastic Leukaemia Story

Complaining of backache 

On 20 January 2022, our beautiful little boy was diagnosed with acute lymphoblastic leukaemia at just eight years old. It began in September 2021 when Reggie complained he had a backache whilst sitting on the sofa playing, when I questioned him on the pain, he shrugged it off saying it just comes and goes so I originally put it down to the position he was sitting in whilst on he’s iPad. Over the next few weeks, he mentioned it again a couple of times but said the pain would come and go within minutes. At the beginning of November, again whilst sitting on the sofa, he grabbed his head and said mummy that pain is in my head now so I booked a doctor’s appointment just to see if we could get to the bottom of the pain (this was during COVID so we waited a week for the appointment). By the time the appointment came around, Reggie was looking quite pale and didn’t have much energy, he was always cold and in the morning of his appointment, I noticed his lips were blue. We arrived at our appointment and I explained all his symptoms to the GP, she asked him to take his top off and glanced him over. She said there was nothing skeletal wrong with him in fact he was healthy and if I was worried to call 111 as the surgery was busy. To be honest, I wasn’t too happy with that but she made me feel I’d overreacted taking him there. I got in the car and said to my husband that I had a bad feeling about all this and something wasn’t quite right.

Pains in his legs 

Reggie occasionally mentioned his legs and back were hurting over the next two weeks so I went back to the GP. Again, I was told by the same lady he was fine, I went straight home and rang 111, I told them all of Reggie’s symptoms and added he now had a slight temperature. They told me nothing I said had raised any red flags on their system so they didn’t feel a hospital trip was necessary. We had a wonderful Christmas but in the New Year we noticed Reggie wasn’t playing with his friends and he just wanted to sit next to us. He said he didn’t have the energy to play and he was cold. The next day, my husband and I were going away for a couple of days and the kids were staying with my mum. I asked mum to let me know if he complained about any pain in his legs whilst we were away. I spoke to my mum on the phone and she said Reggie had wanted to go on a trampoline whilst they were out but within 30 seconds of being on it, he wanted to get off as he was so tired and his legs hurt. I rang the doctors and tried to make an appointment for when I returned the next day but they had nothing for a week. 

It became serious 

Reggie went to school the next day and I received a call from the school asking if Reggie had an ongoing back problem as he was saying he couldn’t do a front roll cos of his back. I immediately went and collected him from school and drove him back to the GP, I called them enroute and said he needed to be seen by a different doctor and basically, I wasn’t moving from the surgery. We were seen that day by a lovely doctor and I explained that on top of all his previous symptoms, his appetite was next to nothing. He said he wanted to get bloods and book him in with a paediatrician (even if the bloods came back ok). I now think I said something that made him think this could be serious. At this point, Reggie had a slight temperature constantly. We had bloods on the morning of 20 January and we were told I would hear in about 10 days what the results showed. However, that same afternoon at 1:50pm I received a called from that same doctor saying his results were back and asked me to get Reggie to our local hospital now. They would be waiting for us and we would find out more when we got there but he urgently needed a blood transfusion. Complete panic filled me, I rang my husband who met us at the hospital but again, due to COVID, he wasn’t allowed in so he waited in the carpark.

That’s when life as we knew it changed 

The doctors were coming in and out asking questions and Reggie’s temperature was now 40 and his heart rate was 213. After many doctors coming and going (which I now know was because they were talking to Great Ormond Street Hospital) I heard my husband’s voice and I went to tell him I would go outside for a bit so he could stay but the doctor said no he would get him a chair and we could both stay. Oh god, why? Was my thought. Three doctors then came into the room and asked me and my husband to follow them to a private room whilst the other doctor stayed with Reggie. I knew this was bad and remember walking the 20 steps to the room but it felt like miles. That’s when life as we knew it changed.

It broke my heart

“I’m so sorry we have found something in Reggie’s blood”. I just stared at them and my husband said “it’s cancer isn’t it?” and the doctor replied “yes and we are so sorry”.  I remember I kept saying no, no he’s a lovely kid he’s just won the kindness award at school, they asked if we wanted them to tell Reggie but we said no we would (how do you do that). We were taken up to the children’s ward and told we would be transferred to GOSH after his blood transfusion as treatment would start immediately. We told Reg that night he had poorly blood and we were going to an amazing children’s hospital and that’s when he asked me the hardest question I have ever had to answer “mummy do children die at that hospital”. I told him “never” and he said “mummy am I going to die”. It broke my heart. I said “no absolutely not you are fine your blood is just a bit poorly”.

Starting Immunotherapy 

We were transferred to GOSH and met by an amazing team, they took me and my husband off and explained the next steps, first an operation the next day to put a port into his chest and that’s where they would give him his chemotherapy and take bloods from. Treatment would start straight away. Taking Reg into theatre was heart-breaking as he looked so frail, but this was just the beginning as 48 hours later we would learn Reggie is allergic to one of the chemotherapy treatments. We questioned how that was possible when he needed this to survive but they had a Plan B and that was to try immunotherapy. For two months, Reggie would have a backpack on that slowly dripped into another line (pic line) into his arm constantly. His consultant once said to me there always a Plan B.

We still have a way to go 

Reggie continued with another round of immunotherapy and to our delight it started to work. Reggie is two years into his treatment and is doing well, we still have a little way to go but his bravery and positive attitude is like nothing I’ve ever seen before he amazes us every day, we cannot thank our hospital and all the amazing charities enough.

Carly, Reggie’s Mum, December 2023 

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