Leanne Williams: my story

Leanne was 32-years-old and 20 weeks pregnant with her third child when she was diagnosed with T-cell acute lymphoblastic leukaemia (T-cell ALL). She was forced to make the choice that no parent ever wants to make: to save her own life at the expense of her unborn baby. Now, just over six years on, Leanne shares her story here…

My diagnosis

“I was diagnosed with T-Cell ALL in November 2017, four weeks after first noticing that I had enlarged lymph nodes.  At the time, I had two little boys, aged 7 and 9, and was 20 weeks pregnant with my third baby.   

Four days after my diagnosis, I was forced to make the horrendous decision to give birth to my baby in order to save my life. The baby would not survive. 

From the start, my journey with leukaemia has not been easy or straightforward in any way. From being diagnosed while pregnant and having to give birth to my angel baby, to having intense chemotherapy for the following 11 months and then a blood clot on the brain that nearly took my life. All that within the first year.

My brain clot in June 2018 resulted in me being put in an induced coma for five days and following surgery, I had to learn to walk and use the right side of my body again. That October I started two years of maintenance chemo. That came to an end in October 2020 and what followed was two years of being both cancer free and drug free.” 

Relapse and stem cell transplant

“Then I started experiencing pains in my spleen and on 12th December 2022, just when we thought life could get back to some normality, I relapsed. The odds were not good for me this time round. I was put on strong chemotherapy and spent two weeks in hospital over Christmas 2022.   

But despite some very intense treatments, it failed to get me into remission. I was then put on some target drugs, which initially worked, bringing the disease in my system down to 5%, but the second round failed. By then, I was back up to levels of 80% disease in my body. Eleven months on from my relapse and the leukaemia was out of control. 

By the end of January 2023, I was told the chemotherapy had not worked. But I was offered the option to go on a new trial – I would be the first adult to ever receive this new treatment. Of course, the unknown was a huge worry and my high level of disease put me at enormous risk. But by that point, I had no other options.  On 12th June 2023, I was admitted to Kings College Hospital in London to trial the TVT7 CART-T early access scheme.  

I underwent CAR-T treatment followed by total body radiation, more chemotherapy and a stem cell transplant. My body was wiped out and reborn on the 1st August 2023.

The first four weeks after my stem cell transplant were hell. I had never experienced pain like it in my life.  And being so far from home made it worse. Fortunately for me and my family, Leukaemia Care was amazing at this point and helped with hotel stays for my family.

I do not know how I got through the 12 weeks I spent in hospital. I had a lot of morphine, which I hated. I hallucinated and slept a lot. I didn’t eat for four weeks as I had Grade 4 mucositis which meant I couldn’t swallow, not even my own saliva. I had a lot of other issues too, but in time, these slowly got better.” 

Living with leukaemia

“Now, I still struggle with my energy levels and my eating is still not great. But I am thankful to have made it passed day +100.  Thanks to the selfless act of a German man who was my donor and whose stem cells have saved my life. I am now 100% donor cells and cancer free.  

I find it extremely difficult to talk about my journey – it has been very long and very painful, a rollercoaster of emotions and physical challenges.  I still have many hurdles to overcome, both physically and mentally, but I am grateful that I now have another chance at life and I will be making the most out of it.  Tomorrow is not promised.” 

Support services

If you or a loved one needs advice or support regarding your diagnosis, please get in touch. You can call our free helpline on 08088 010 444 and speak to one of our nurses. Alternatively, you can send a message to our team via WhatsApp on 07500 068 065 (services available Monday to Friday, 9am – 5pm).

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