It started with pains in Jesse’s legs

Jesse was diagnosed with acute lymphoblastic leukaemia in April 2019 when he was six years old. His mum, Nina, shares their story: Support children like Jesse so that they have a future they deserve.

Jesse in hospital bed having a blood transfusion during Christmas

It started with leg pains

Jesse started having leg pains and I thought they were growing pains so I made a general doctor‘s appointment to get him checked out. Just to make sure there wasn’t anything that I should be concerned about. We were then referred to the local hospital to the paediatric team to have a look at him to see what was going on. Jesse then had routine bloods and they booked him in with the physio. We just continued as normal, taking him to school but he was getting progressively worse. He couldn’t walk and then one day he literally stopped walking as he was in so much pain. I took him to A&E as I was very concerned at that point. The nurses and doctors thought it was a viral infection. A few days later, I had a phone call from the hospital saying; “can we bring Jesse up we need to go through some things with you now that we have the blood test results?”. At that point I then thought that something drastic was wrong with Jesse. But I didn’t think for one minute that it was going to be cancer. We stayed the night at the local hospital and then in the morning we were on our way to a bigger hospital for Jesse to have a bone marrow to determine what type of cancer it was.

The leukaemia diagnosis

Jesse had lots of tests and I was told that he had acute lymphoblastic leukaemia. Jesse would need to go on the Regime C. Obviously at this point I was absolutely devastated and didn’t think for one minute that my child would have cancer. I don’t think anyone does have that in their head at all. On 7 April 2019, Jesse started his treatment. We stayed on a whilst his treatment was being administered. It was all overwhelming and I didn’t know what to expect. Jesse then had to have a central line put in his chest so he can have his chemotherapy. It was all very stressful as we didn’t know what to expect.

Jesses diagnosis was a total shock to us all. I had only just moved to a new location in December 2018 and Jesse started his new school in January 2019. Jesse had only done one term before I was told the devastating news just before Easter 2019. Jesse’s school was so brilliant, and very supporting not only with Jesse but I had just started working at his school at lunch times. I had to leave the job and become Jesse’s full-time carer so it was tough. To be honest his diagnosis didn’t really sink in for a couple of weeks. I think I was going through the motions. I had to explain to Jesse’s brothers that he had leukaemia and what was going to happen to their little brother. It broke my heart to see their faces when I told them but they have been amazing and very protective.

The treatment journey has been tough

The treatment is obviously very harsh on the children. Jesse lost his hair, his appetite changed, and his mood changed as well. Jesse started being sick, his legs were weak, so he was in a wheelchair, and I just felt our whole world had fallen apart. I couldn’t do anything to stop it all for him. I can’t remember how many times I said to Jesse at them really low moments; “if I could have it for you, I would do.” I just had to be there for him, cuddle him and tell him that everything is going to be alright. Obviously, Jesse was only six years old, I don’t think he really understood what was going on. Jesse responded really well to his treatment; he had several rounds of chemotherapy at different points in his treatment. We got to the maintenance stage where this is supposed to be the easier part of the treatment but that wasn’t the case for Jesse. Jesse then had a major line infection which ended up resulting in him having sepsis and spending almost a month in intensive care. He also had to have dialysis because his kidneys failed. All his medicine was given to him through a tube. Jesse was very poorly at this point and it could have ended very badly if they hadn’t acted quickly and taking the line out. The team at Saint Richards Chichester were absolutely amazing. We got blue lighted from there all the way to Southampton to the intensive care unit where they continued to look after Jesse and we stayed in for just under a month in the end.

Jesse has missed out on a lot

Jesse has missed on lots due to his diagnosis and treatment. He was hardly at school for first two years at a crucial time in his learning. So now he has to have a tutor to try and get him on a par with his peers. He’s confident but I can see him worry about what people think and if he is doing the right thing. Seeing his friends doing stuff that he can’t quite do really affects him.

Jesse was meant to start swimming the week he was diagnosed but obviously that didn’t happen. Jesse has a central line so can’t go swimming or get it wet in case he gets an infection. That’s one of the first things he said he would like to do when he finally finishes and his line is removed. Fingers crossed that will all happen in October 2022. He has missed out on birthday parties and all the fun of Christmas activities. We made it home on Christmas Eve 2021 after he was in hospital for a week. You just can’t plan anything as one minute he will be fine and the next he has a temperature and we have to go into hospital for IV antibiotics for 48hrs.

Jesse’s near the end of his treatment

Jesse is now almost at the end of his treatment for leukaemia, and we can see the goal posts. This whole journey has not been easy for anyone. Jesse is one of four boys, they’ve all been brilliant with him. Jesses is the youngest but it does take a toll on the whole family, but you just have to get on with it. He is an amazing little boy and I don’t know if I would’ve been able to do it without him being so strong.

He’s just an inspiration.

Nina, Jesse’s mum, August 2022

Update: January 2023

We had a lovely Christmas this year but ended up having to the hospital with Jesse as he had that throat infection and needed antibiotics. But that was between Christmas and New Year. He is all ok now. Jesse has now finished his treatment and all his medicines have stopped. Jesse is now having his monthly check-ups and physio as his mobility is still an issue and needs the wheelchair. These are side effects of the treatment and his original diagnosis.

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