We realised that something wasn’t right with Jackson when he got a petechiae rash that covered his stomach and back – he was otherwise well in himself, running and playing as normal. 

Our niece had meningitis as a baby so if Jackson or his sister had any kind of rash, we always got it checked out. We did the tumbler test on Jackson and the rash didn’t change or disappear, so we walked over to A&E at St Helier Hospital.

They ran blood tests on Jackson we waited for the results in a room at the hospital, for what felt like ages. As soon as the doctors came back, we knew that something was wrong – their body language showed that they were about to deliver bad news.

They told us Jackson’s white blood count was dangerously high, and they suspected it was Leukaemia. I burst into tears – in my head Jackson was gone and that was it. My husband Shaun kept his composure and spoke to the consultants, but as soon as they left, we both broke down. 

We had to tell our family the news about Jackson, still in denial that this was happening to us. I will never forget the image of Jackson asleep in his buggy while our world crashed around us.

We were blue-lighted from St Helier Hospital by the South Thames retrieval service to PICU at St George’s Hospital where we spent the day and then were transferred to the Children’s Ward.

The following day, Jackson has the portacath fitted for the chemotherapy, and he started treatment, just two days after diagnosis.

On 5 February we got transferred to The Royal Marsden where Jackson had a lumbar puncture and bone marrow aspiration. This is when we received the official diagnosis of T-Cell Acute Lymphoblastic Leukaemia.

By day eight of treatment, Jackson’s bone marrow aspiration showed he had early rapid response to treatment, and he reached remission on day 29. 
Jackson’s treatment consisted of seven months of intense chemotherapy and then just over two years of maintenance treatment. Jackson’s treatment lasted three years and three months in total, ending on 23 April this year. 

We found out about Momentum when we were patients at St George’s Hospital. Momentum have been great to us ever since Jackson’s diagnosis, especially when we were stuck in hospital. We received help from one of their Family Support Workers, who often sat and spoke to me for over an hour at a time. This emotional support made the world of difference to us, especially during the COVID-19 pandemic when there were so many restrictions on who we could see and what we could do. 

Staying at the Momentum respite cabin was the absolute best – we only got the opportunity to go during the last year of Jackson’s treatment, but every time we have gone it’s been amazing. We love Shorefield Country Park, and it was so nice to have something to look forward to when we were going through such a tough time.

Jackson also had sessions with a Play Therapist which he really enjoyed, all organised by Momentum.

When Jackson finished treatment, it was a strange feeling – we spent three years counting down to the end but when it came, I almost didn’t feel ready for it to be over.

St George’s Hospital have been so great to us. For Jackson to be able to ring the new bell there at the end of his treatment was a wonderful experience. Nurses on their day off came in to see Jackson ring the bell, it was honestly such a great turnout.

I feel incredibly nervous about treatment ending – it feels like we have only just got used to this life, and now we have to try and get used to “normal” life again. Not just that, there is always the worry of the cancer coming back and I don’t think that will ever go away.

It has been just over two months since treatment ended. We have been so busy -we’ve had the bell-ringing and had a party for Jackson which was so lovely, and it raised £1250 for Momentum. Jackson’s dad, Shaun, works for Rentokil Initial, and they are match funding the money we raised, so an extra £500 is coming too!

Jackson had his portacath removed on 6 June, so now it really feels like treatment has finished. He has his nasogastric (NG) tube until the end of July as he must take antibiotics every weekend for three months post-treatment. We have six weekly appointments alternating between The Royal Marsden and St George’s hospitals for the next year. If Jackson gets a temperature of 38 degrees between now and October, he will need to be admitted to hospital. 

We are looking forward to doing normal things like going away on little breaks without the worry of illness and hospital. We will be having plenty of days out too, especially as we have just got a new puppy called JJ, after Jackson’s Journey.

Thank you so much to Momentum for being there for us while we experienced the worst time of our lives. We really appreciate everything you have done for us.”