Dylan C

13 July 2016
Dylan with dolphin

Eight year old Dylan was diagnosed with acute lymphoblastic leukaemia (ALL) in January 2015. He is still undergoing treatment. His mum, Lorraine, tells their story so far:

"Dylan was having high temperatures in the evenings. When we took him to the doctor’s, during the day, they could never find anything wrong apart from swollen glands. They gave him a course of antibiotics, but the temperatures continued.

Dylan in hospital with mum

Dylan wasn’t himself

Dylan wasn’t himself - I knew something was wrong. Rather than join his brothers playing, he preferred to snuggle on the sofa with me.

When we noticed that Dylan had a swollen wrist my husband and I decided to take him to hospital to get it checked. I explained my worries to the doctor we saw explaining that his symptoms were reflective of an article I had read where the child was diagnosed with cancer.

I was completely prepared for the doctor to tell me I was overreacting. But they took me seriously and examined him thoroughly and did blood tests.

Coping with the diagnosis

I knew it was bad as soon as the doctor asked to speak to us in private. Although cancer had crossed my mind I never believed Dylan had it. We were totally shocked and heartbroken for him. I remember just bursting into tears with my first thought being that he’s going to die.

Dylan after his port was put inIt was very hard since we had six boys ranging from one to 17 years old. We were told that Dylan would have to be kept in hospital for further tests and treatment. I'm disabled and my husband is my carer. We asked my cousin to pick me up, and my mother-in-law to stay over to help me.

We had to explain to Dylan he was poorly with bad blood and needed to stay in hospital. He was so upset that I couldn't stay with him, but accepted that daddy would be with him.

The next couple of weeks went by in a sort of daze. We learnt Dylan had Acute lymphoblastic leukaemia (ALL) and were told what type of treatment he would need. I also had to explain to him that he had cancer - I didn't want him find out from someone else. I was taken aback when he replied “Am I gonna die?” Of course he’d heard about cancer, and many times it’s associated with death.

My oldest son Lamar had a panic attack a few days after the diagnosis. It was very frightening - he collapsed and was clutching his chest but thankfully the ambulance crew were great. He was allowed home after observation.

I think Dylan's diagnosis had a huge impact on all of us. Those first few weeks were extremely hard to cope with but we had excellent support from family and friends.

The pain, discomfort and side effects of treatment

Effect of steroids on DylanDylan was put on “regiment A” for treatment which was intense to start with. The intravenous therapy (iv) was taking its toll. Every time they poked him he would scream in pain. So he had a port put in to make administering the drugs easier. It was tough seeing him getting prepared for his operation.

He was given lumber punctures to test the fluid and to put the chemo in directly. All other chemo was given through his port and up until now that's how he is accessed for weekly bloods and chemo although he does take oral chemo.

Dylan was also on steroids which saw him balloon up and his mood swings became intense and frequent. That was hard, and is still hard to deal with because it’s not the Dylan we know.

There are constant side effects of all the treatments including mood swings, hair falling out and mouth sores. Any sign of a temperature means he has an infection and has to be admitted to our local hospital, which has happened many times.

In remission, but for how long?

As I write this Dylan is in remission, but I'm fully aware that he can relapse at any time. It’s hard to rejoice until all his treatment is over - I know we are all still walking on egg shells.

Dylan and family

Wonderful support

If anything positive has come out of Dylan's diagnosis it is all the help and support we've had from family, friends and complete strangers.

Days out with all our boys are few and far between, but so greatly appreciated at a time when smiles and laughter are rare."

Lorraine, June 2016

Lorraine has since sent us the photo of Dylan and the dolphin, taken in July 2016, on a family trip to Florida organised by the Rays of Sunshine Children's Charity.

Read more: Treatments | Side effects of treatments | Acute lymphoblastic leukaemia

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