Dylan’s Story

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Dylan’s Story

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Dylan was a spirited 6 year old boy who loved football. On the 6th March 2020, Dylan tripped over in the school playground playing with another child and bumped his head, this resulted in what we know now to be Dylan’s first seizure.

After his first ‘episode’ I took him home and after a little rest he seemed fine and went back to school. He didn’t complain of any headaches and seem to bounce back quickly, however the following Saturday when Dylan was doing some football training with his team he had another funny turn, so we decided to take him to our local A&E to get him checked over.

[/fusion_text][fusion_text hide_on_mobile=”small-visibility,medium-visibility,large-visibility” sticky_display=”normal,sticky” animation_direction=”left” animation_speed=”0.3″ animation_delay=”0″ font_size=”35px” line_height=”1.2em”]

We thought where he had bumped his head,
he was maybe suffering with concussion.

At A&E Dylan was checked over, but nothing seemed to be abnormal and he appeared bright and full of cheek (as normal) so we were sent home.

The next day was Dylan’s football birthday party where he went onto to have another 6-8 little attacks, they now seemed to get more severe in that he always turned to the left side, his arms went stiff and he had a very glazed look on his face. Determined to continue his party with his friends he wouldn’t leave and so we agreed once his party finished we would head back to A&E.

Once we arrived he was again checked over but again nothing seemed to show that they would be concerned about. They decided to keep us for 24hrs to monitor him. As Dylan appeared well and had no seizures whilst we were at the hospital they discharged us saying they thought he was perhaps having panic attacks – I knew that Dylan wasn’t having panic attacks and after asking for a second opinion I was reassured it was nothing serious and sent home.

5-6 seizures a day

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The next day Dylan had another seizure as he was running with a friend and fell to the floor resulting in him hurting his arm and needing to head back down to A&E. They again did the same neurological tests and fitted him with an ecg to monitor his heart but couldn’t see anything worrying, they wanted to send us home but I insisted they did something else and asked if they could do an MRI – they refused as didn’t see the situation as an emergency but instead after a lot of discussion they did a CT scan. The CT revealed nothing.

We were told by the consultant “as I expected there is nothing worrying there, no tumours!”

I felt so relieved and we were referred to the First Fit clinic.

Dylan continued to have 5-6 seizures a day, he dealt with them like a super hero, and we tried to keep as calm as we could. We just assumed he had developed epilepsy and that once we had been seen he would be offered something to help control his seizures. As this was happening at the same time the country went into lockdown it took 6 weeks for the consultant to get in contact with us.

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After a brief conversation and filling the consultant in on the fact that Dylan was still having daily seizures she then referred us for an emergency EEG at our local hospital. During the EEG they found there was a lot of activity in the right side of the brain so the next day Dylan was then sent for an emergency MRI and to be started on his first anti seizure drug.

Dylan was amazing during the MRI and stayed so still. We then got settled into his hospital bed for the evening and they started him on his new medication Keppra – I remember at the time being told by the consultant to google what Keppra was and did.

I was amazed they weren’t taking the time to explain everything about Keppra – but I did as I was told.

Keppra is given as a first option to help control seizures and stop them – we trusted that would happen. However, unfortunately for Dylan they made his seizures so much worse – they turned more aggressive which often meant he crashed to the floor – he split his eyebrow open on 2 occasions.

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After the MRI I remember being called to another room by 2 consultants, they both explained to me that the MRI showed a lesion on the right side of Dylan’s brain and that they suspected it was a brain tumour. I couldn’t believe it, and one of the things that made it so much worse was that my husband wasn’t allowed in to hear this news with me. He was at home and I had to tell him over the phone.

Over the course of the next 2 weeks, Dylan seizures continued and we tried our best to carry on as normal and not think too much about how our world had been turned upside down.

It was hard to believe that out little boy who was fit and healthy in every way had a tumour in his brain.

We thought they must have been wrong. Dylan was sent for a further MRI scan and then had a biopsy which after another 2 weeks of waiting we were sent to the Royal Marsden hospital where we were told Dylan had a high grade glioma and the prognosis was not good.

The consultant explained to us the tumour couldn’t be operated on because of where it was and the way it had grown (it was growing as part of his brain rather than a lump). We were in total shock and disbelief. We were told to go away process the information and then come back a week later when we could then ask any question we had.

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So we came home and researched and went back to the hospital full of hope and questions of what we could do to help our little boy. It was at that meeting we were told that chemo and radiotherapy was all that they could offer but to be prepared that in these types of tumours it wasn’t successful and unfortunately there was very little they could do. We asked our questions about diet, supplements, and other treatments but was told there was nothing that could be done.

Apparently we were doing everything we could do already – and I remember thinking at the time but you have no idea what it is we are doing??

Thankfully we were put in touch with our guardian angel, a nurse in America that gave us the hope we needed.

When you’re told by the hospital that your child has cancer, you feel completely powerless.

Kristin gave us the hope that we needed.

Dylan went through 6 weeks of intense radio therapy and chemo, and in that time we changed his diet hugely. We researched everything we could do to boost his immune system, and food was a powerful tool. Throughout his treatment we explained to Dylan that he had a brain tumour and we would do everything we could to help it go away and the treatment he was having was giving him superpowers to help him fight it. We also told him that the foods he ate would make him feel better and fight the tumour as well.

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After Dylan finished his radio therapy he really went off his food and lost weight, he also suffered hugely with his seizures, having between 18/20 a day. It took us what felt like forever to get them under control, he was put on 3 different seizure meds and all that was suggested to us was to keep increasing his meds, thankfully again we had help and support elsewhere so we decided to increase his CBD oil (he had been on this since he started his treatment) and to our amazement we started to gain back control of his seizures. Over the course of the next 5 months Dylan went from strength to strength, gaining weight, going back to school and back going back to what he loved the most his football.

From the very beginning of Dylan being diagnosed it was always our goal to make each day really count and to do our very best to get him back to school and back to football.

Dylan made such amazing changes to his diet and went from eating a typical child’s diet to eating a variety of amazing ‘super foods’ foods that were high in omega 3 (super important for the brain and fighting inflammation). It wasn’t always easy and some days were really tough, but we had amazing support from our family who all supported us and did everything they could to help make the dietary changes we needed to make.

Despite all our hopes and Dylan thriving, unfortunately in April 2021, just after he turned 7 we started to see changes in him – first it was just that he seemed very tired and then we started to see more weaknesses in his left side. We weren’t sure if it was due to the chemotherapy or due to the tumour, so we asked for a MRI scan. Unfortunately our worst fears came true when we were told that Dylan’s tumour had started to migrate. We were told that the chemotherapy would stop (he did 10 rounds) and there was little more they could do. We were passed onto the palliative care team and we took Dylan home.

Over the last few weeks of Dylan’s life, we never stopped fighting.

Superfood Superheroes

Each day we could see Dylan slipping away from us but we kept fighting. Dylan sadly passed away on 11th June at home with myself, Darren and my mum by his side. The last 6 weeks of his life he was surrounded by our amazing family, they helped fill our home with laughter – some days were so hard, but we all knew that no matter what Dylan was happy being at home surrounded by the people who loved and cared so deeply for him.

I spent hours researching how to slow cancer growth and how to help the body create new healthy cells, I was amazed by the information I found.

Although Dylan is not with us in person, he is most definitely with us all in spirit – and it’s through his spirit that The Dylan Strong Foundation was born. We want to help support children diagnosed with cancer and their families. We want to give them all the help and support we had to help Dylan thrive. We now know the power of good nutrition and although it wasn’t able to cure Dylan it made the last year of his life without question so much easier and it gave us power, control and most of all hope that we were doing everything we could do for our little boy.

Dylan loved superheroes so the superfood superheroes you see on this site have been created around his love for superheroes.

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Meet Alice the Apple, Sidney the Salmon, Bobby the Broccoli, Adam the Avocado and Benji the Berry, hover over them to see how they help the immune system and more.

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