Receiving a haplo-identical stem cell transplant for leukaemia

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I’ve written this story twice. The first time, I tried to ‘be a Writer’. I tried to mould the narrative arc, as if it was a movie, played out by coherent characters, with emotional clarity, as a series of profound and moving scenes. But I couldn’t reconcile this with the reality of my lived experience. This is version 2.0 of the story; the story of how my older sister came to save my life. 

Since we were young, Lucy and I have been quite different; she is practical, creative and a self-declared introvert; I like writing, performing, and generally showing off. We had the usual childhood spats, but on the whole we got on, and found ways to have fun together. When we made our first home movie, she was in charge of props and filming while I was in front of the camera. When I wanted a Supergirl outfit for a fancy dress party, she sewed me a cape. I sang at her wedding; she made the bouquets for mine. 

I moved away at 18; to uni and then to the bright lights of London; Lucy stayed closer to home in Suffolk. Sometimes when we were both busy we’d not see each other for long periods of time, but I always looked forward to visiting, seeing her latest craft projects, and in more recent years, hanging out with my young niece and nephew. 

In 2019, we decided to take our parents on a family holiday, visiting ‘old haunts’ from our childhood trips to the Yorkshire Dales. While we were away I was suffering from severe backache, which I put down to having spent too long sitting in the car. It went away and I forgot about it, but over the next few weeks, I came down with a sore throat, swollen gums and overwhelming fatigue, followed by another bout of spinal pain. 

Unsure what might link these symptoms, my GP referred me for a blood test. Later the same day I received a phone call telling me to go straight to A&E, where I was diagnosed with Acute Myeloid Leukaemia; an aggressive form of blood cancer. I knew nothing about leukaemia except that people died from it. 

The blood test that changed everything

I suppose this is the part of the story where one might expect emotional phone calls, tears, a search for inner strength and a distraught sister traversing the wilds of East Anglia in the middle of the night to be at my bedside. The truth is, our early conversations were mostly FaceTime calls with Lucy’s young children present – so we kept things light and positive. These chats were a welcome distraction for me between the much heavier conversations I had with my medical team, my husband and my parents. 

During this time, I started intense chemotherapy and spent many nights in hospital feeling feverish with the inevitable infections that took hold of my body and its weakened immune system. I was told that being young and otherwise healthy gave me the best possible prognosis, but this probably made my chances about 50/50.

Friends and family showered me with love and care; my husband, Ed, visited daily and my parents made the five-hour round trip to see me countless times during treatment. Lucy was nearly 100 miles away, with work and childcare commitments, which made visiting almost impossible. She did manage to come and see me during a business trip; at my bedside she took out her laptop and shared a lovingly compiled video montage of my friends ‘galloping’ (Miranda style) in my honour. I thanked her, and – ever the drama queen –  proceeded to vomit violently. Neither of us had any idea that she would ultimately play a more important role than anyone in my survival.  

My doctors had mentioned early on that any siblings should be tested ‘just in case’ I later needed a stem cell transplant, and Lucy had no hesitation about taking a blood test. Our conversations didn’t go how they would in a movie. We talked about the hypothetical possibility of her needing to give me a life-saving infusion of her precious DNA as though we were sorting out an Ikea delivery or a some other logistical task. Was it better to ask the GP or the hospital about getting tested locally? Did we trust them to post the samples, or could my parents bring them to London on one of their visits? In the midst of a crisis, the task of obtaining these samples was a tangible, useful thing that my family were able to get on with. As a dear friend observed, we took a methodical, problem-solving approach to the situation. 

When Lucy’s test result showed that she was a ‘half match’, I assumed this was bad news. I don’t have any other siblings, so she was my best chance of finding a ‘10 out of 10’ donor. I put it to the back of my mind and kept hoping that I wouldn’t need a transplant.

My only hope

I underwent three rounds of chemotherapy over five months, but after the third round I failed to recover. My cancer had been wiped out, but so had my body’s ability to produce vital blood components like haemoglobin, platelets and white cells. I became reliant on regular transfusions, and with severely compromised immunity, I felt like a ticking time bomb, waiting to catch a potentially fatal infection. Nevertheless, I was unprepared when my consultant told me at a routine check-up that a stem cell transplant was now ‘the only way out of this.’ I was even more surprised when they said they we should go ahead and use Lucy as my donor. 

From what I understood about my situation, a half-match didn’t seem good; historic attempts often ended in failed engraftment, where the body rejects the donor cells. But by now I had learned that, like almost a third of people needing a transplant, I didn’t have a good match on the national or international registries. Just a few years ago, this situation might have been the start of a desperate search against the clock.     

But medicine is moving faster than I could have imagined. Recent clinical trials, in which new types of ‘conditioning’ treatments were given prior to a haplo-identical (half-matched) transplant, showed promising results. I was incredibly fortunate to be under the care of the same doctors who’d led such a trial. They told me with confidence that I was a perfect candidate, and that this option, while still risky, had as good a chance of curing me as a full-matched transplant. 

Extreme problem-solving

Back in hospital, I underwent high intensity chemotherapy and Total Body Irradiation; procedures designed to wipe out my own stem cells completely before introducing new ones, so that the blood becomes 100% donor-derived. Meanwhile, Lucy made three trips to London; first for a health check, then to donate lymphocytes (white cells), and a week later, stem cells. The procedure itself involved taking blood through a needle in one arm, passing it through an ‘apheresis’ machine to filter out the required cells, and then returning the blood via her other arm. 

Although each donation took about four hours, I was relieved to know that the process was painless for Lucy. My part was even easier, with the stem cells going in through a drip that took under 15 minutes. 

It was a surreal moment for us both as Lucy sat by my bedside and we watched the small bag of yellowish liquid emptying into my veins. We knew that this was the most precious thing one sister could ever give to another, and yet at the same time, the moment was almost underwhelming. There were no fireworks, no surgical scars, no dramatic moment of waking up, and no instant results. In my extremely fragile, nauseous state, I didn’t think to get a photograph of us together on that momentous occasion. 

As soon as the infusion was finished, Lucy and our Mum, who’d accompanied her, had to leave to catch the last off-peak train back to Suffolk. Less than 24 hours later, the hospital banned all visiting, following the WHO’s classification of Covid-19 as a Global Pandemic. 

I spent two more weeks in hospital, on a cocktail of intravenous drugs which helped my body to accept the stem cells. I was barely well enough to talk on the phone, and reached my lowest ebb in every way. But I knew I’d been lucky. 

After the transplant, I didn’t see Lucy for almost 100 days because of coronavirus. Over the summer, Ed and I stayed with my parents for four months, but due to infection risk, Lucy and her family were banished except for occasional garden visits. Not exactly how I wanted to repay her for saving my life. But she never once complained. This was just another thing we had to do, to solve the latest problem in front of us. For nearly 500 days we didn’t share a hug. When we finally did so (after both getting our Covid-19 vaccines), the “thank you” I managed to whisper hardly seemed like sufficient acknowledgement.  

I’m now almost 18 months on from my transplant and feeling physically well, thanks to my medical team who’ve helped me through many side effects. For the rest of my life, I will carry my sister’s DNA in my blood; earning myself the official status of a medical ‘chimera.’ It’s mind-bogglingly wonderful to think that she’s literally, physically a part of me now – I’ll be grateful to her forever. And yet, day to day, we haven’t changed much at all. Yes, there are times when I’m overwhelmed with awe thinking about what she did for me. And she might occasionally tell me I’m a magical unicorn. But really, we’re just a family, who worked together to solve a problem. 

Learn More

NHS on Stem Cell Transplants

Blood Cancer UK leaflet