BBC Lifeline Appeal: Graham shares Darcey’s story

Graham’s daughter, Darcey, was four-years-old when she was diagnosed with acute lymphoblastic leukaemia (ALL) in June 2020. When she suffered a relapse in May 2023, her only option was to undergo CAR-T therapy at a hospital many miles from home. Graham explains how support from Leukaemia Care helped keep the family together at this very difficult time as part of our BBC's Lifeline Appeal…

“Darcey had never experienced any symptoms in the run up to her leukaemia diagnosis. She was just a normal, active four-year-old.

But in June 2020, she fell off her scooter. It did not seem a serious incident at the time. In fact, my initial response was to simply say to her ‘Up you get, you’ll be OK’. But by the following day, she was still complaining of pain in her arm. 

We took her to a local walk-in centre where something unusual was spotted on her X-ray. Nobody was quite sure exactly what was wrong, so it was decided she would need further scans and at this point, her bloods were taken.  The results showed that her blood count wasn’t right, so she was moved to our local hospital for further tests. We really had no idea what they were looking for. From our point of view, the worst-case scenario was that she had a broken arm. 

My partner, Kelly, stayed with Darcey, and they were moved into a private side room. At this point, we suspected something serious might be wrong. I remember Kelly Googling to see what raised blood levels might mean – and it came up with the possibility of cancer. Darcey’s bloods were sent back and forth while the doctors tried to get to the bottom of what was wrong. They were showing as abnormal, but clearly because her ALL was at such an early stage, it was still hard to detect. 

The following day, we were told that Darcey had leukaemia – although at this point, it was still unclear what type. It was a total shock.  Up until now, we were just a normal family. I had never known anyone who had cancer and I was filled with questions: What does this mean? What are Darcey’s chances? What journey will we all have to go on?  Everything we were dealing with was new. 

At the time, our younger child, Henry, was just a year old, so as a family, we were split up – Kelly stayed at the hospital with Darcey while I remained at home with Henry. It was a very tough time. 

Darcey was blue-lighted to London and started chemo immediately. She spent four weeks in hospital, even ending up in intensive care at one point. There were Covid restrictions in place at the time which meant only Kelly could be with her. The plan was for Darcey to have intensive chemo in hospital followed by two years of treatment as an outpatient. 

Despite losing her hair, she handled the chemo reasonably well, but it soon became apparent that it was not working as well as the doctors had hoped, so she was put on a more aggressive treatment. After about 30 weeks, her Minimal Residual Disease levels were still not low enough, so her only option now was a stem cell transplant.

The whole family was tested, but no one was a close enough match for Darcey. Fortunately though, a near perfect match was found for her in a donor from Germany and in February 2021, her transplant took place.  Again, she responded very well, with very few side effects. It was deemed a success and she spent the next two years in remission. She went back to school, we went on holidays, life returned to normal. 

But in May 2023, she suffered a relapse. It was a shock to everyone, including her consultant who told us it was very rare to relapse this long after a successful transplant. 

Darcey had fallen over at school and was complaining about pain in her arm, the same arm that she had originally hurt when she fell from her scooter.  We took her to A&E where an X-ray confirmed she had no broken bones. Her blood results were a little strange, but nothing too alarming. We were told she was probably running a slight infection and she was discharged. 

Her consultant suggested we do a bone marrow biopsy, just to reassure us there was nothing sinister going on. He was not expecting any cancer to show up, especially with Darcey having been in remission for this long post-transplant. Darcey’s arm pain subsided and we got on with life, assuming everything was OK. 

But a week later, her biopsy results came back and they revealed that her cancer had indeed returned. It was a horrific shock for all of us and once again we were filled with anxiety over what would happen next and what Darcey’s options would be now… 

We were told that there was no choice but to put Darcey forward for CAR-T therapy. This would take place at Great Ormond Street Hospital, two and half hours’ drive away from our home in Kent.  We had no idea how we would manage everything.  Henry was now at school and with one of us staying with Darcey in London, the family would once again have to spend weeks apart. In addition, there were the financial worries of the frequent travel costs to and from London, made worse by the fact that Kelly and I were having to take long periods of time off work.

At this point, I was told about Leukaemia Care’s CAR-T Away From Home Service which truly provided a lifeline for us at this incredibly difficult time. Leukaemia Care provided us with hotel accommodation close to the hospital so that as a family, we could remain close together, offering emotional support to Darcey and to one another.  We were able to visit Darcey during her treatment.  Without the grant we received from Leukaemia Care, there is no way we could have afforded to be together and an already difficult situation would have been far more stressful. 

Now, nearly eight months on from her treatment, Darcey is doing well. She will remain on maintenance drugs for another two years, but for now, we are hopeful and positive.

Darcey doesn’t really understand how seriously ill she has been over the last four years.  It is all she has ever known and it’s just been a part of her life.  As parents, it’s hard to look back and remember the times before she became ill, when we were just a normal family without the anxieties we face today. But we are making it a priority to make memories and after so many months of separation, we are enjoying every minute together.”

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For advice on vaccines and blood cancer in general, read our helpful article on why blood cancer patients need vaccinations.

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