Nikki Knight: Toby’s story

In 2022, Nikki’s world was thrown upside down when her son, four year old Toby, was diagnosed with acute lymphoblastic leukaemia (ALL) on World Cancer Day. Navigating life as a ‘chemo-mum’ is full of challenges, which Nikki describes below.

Friday 4th February 2022 was World Cancer Day. Ironically, this was the day our world changed overnight as we discovered our child has B-cell ALL.

Let’s rewind.

Toby, our little Dinosaur, had a positive PCR test on New Year’s Eve and developed symptoms of COVID-19 later that day; he was fatigued, fevered and seemed to be bruising easier than normal. The isolation period had finished, but he never seemed to get any better.  

On the 2nd of February, he was sent home from nursery with a temperature and he spent the next couple of days feeling extremely hot and tired. I then noticed something of what appeared to be a red meningitis-type rash on his thigh that didn’t fade when I did the glass test. 

I took Toby straight to the A&E, where he was treated with salbutamol and sent up to the paediatric assessment unit. I explained all the symptoms to both the doctor and senior doctor. They sent Toby for an x-ray and ordered extensive blood tests. 

We waited for the results to come back, and at about 9.30pm a doctor and two nurses came to talk to me. As soon as I saw the looks on their faces, I knew something was terribly wrong. I was told all signs were pointing towards leukaemia.

My heart skipped a beat. I felt sick and burst into tears. The nurses asked if I wanted to call someone and it dawned on me that I was the only one that knew. Toby was busy playing with his tablet so I took the opportunity to hide in the ensuite to phone my husband and break the news to him. Next thing we knew, we were getting ready to be transferred to Bristol so he could formally be diagnosed and start treatment. 

My baby is now five; doing well in his treatment course that he is on for 18 months. But, I can’t shake this dark, looming feeling over me. 

This time last year, I had a normal, healthy and happy boy. Five months later he was diagnosed with leukaemia. I’m terrified that this will be his last birthday. There is literally no reason for me to feel like this; he is at the lowest risk factor for relapse, his treatment is going according to plan and there is no reason to think that the leukaemia will take his life. But, I still can’t shake the feeling that I’m going to lose my baby.

I received the counselling fund from Leukaemia Care which is helped me come to terms with these emotions; the sessions were phenomenal and they really helped me out of the darkness. Helping others by volunteering with the charity, whether that be reviewing booklets, being an area ambassador or sharing my story online helps me make sense of what is going on, and helps me through my own journey. 

Blogging is also a huge passion of mine; it’s a creative, non-judgemental outlet for my feelings whilst I come to terms with my son’s diagnosis. It has been hugely beneficial to my mental health – needless to say, a childhood cancer diagnosis is a huge rollercoaster of emotions.

If you would like to follow our journey, please do have a read at: https://www.unicornsdinosaursandme.com/

Support services available

Like Nikki, our Counselling Fund can support you too.

We provide access to private counselling services through the provision of grants so everyone affected by a leukaemia, MDS or an MPN diagnosis can get the support they need and deserve.

We can provide a grant for a maximum of six counselling sessions, equating to a maximum of £400 per application. 

To be eligible, you must be a patient with a diagnosis of leukaemia, MDS or an MPN or a parent, sibling, child or spouse of a patient. 

Applying is easy. There are two ways of doing so; either online or via post by downloading our paper application form. We will then be in touch with the next steps. 

For more information, our full eligibility criteria and to apply, head over to our website here

You can view all of the support services that we offer here

CAR-T information hub

CAR-T (Chimeric Antigen Receptor) cell therapy is a type of leukaemia treatment. If you are about to or are undergoing CAR-T treatment, get the support you need from Leukaemia Care.

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