Posted on Wednesday 3 June 2020

Dylan-James’ story: “We were busy making our family’s plans of hopes and dreams for Dylan-James’ bright future ahead and overnight our whole world changed. Life gave our little boy childhood cancer.”

Dylan-James’ mum Alison is sharing their story in support of CLIC Sargent’s campaign calling on the government to urgently provide financial support for CLIC Sargent during the coronavirus crisis. We are asking families to sign an open letter to the government who have been supported by CLIC Sargent.

Alison said: “I’m supporting this letter to government and urge them to give CLIC Sargent immediate financial support because I know what a difference their Social Workers make to families like mine. When you’re told that your child, who is your absolute universe, has cancer, you can’t think about anything else. CLIC Sargent has been there for us every step of the way. The support we’ve had has been invaluable, especially when it came to practical things like applying for a blue-badge or disability living allowance. I needed to just be there for my son.”

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Dylan-James passed away just weeks before his 4th birthday, after being diagnosed with Wilms Tumour 11 months earlier. Alison, Dylan-James’ mum, shares their story:

Dylan-James

It was just before the summer holidays and we were getting prepared for going away. We were really looking forwarding to an amazing summer holiday we had booked and we were pretty much ready to go – our packed bags were even in the hallway. I’d taken Dylan-James and and his brother Elliott to have some travel vaccinations on the Monday that week, but on the Friday Dylan-James still wasn’t well, and I knew he shouldn’t be feeling like this five days after the jabs. I left work on the Friday afternoon, telling colleagues my son wasn’t well and that he had a fever, and that I’d see them on Monday. But that night our world turned upside down.

He had a tummy ache and a fever and his daddy said his tummy felt hard, so we took him to A&E that Friday night, and once we got there, they weren’t letting us go. We were still there on the Saturday morning, and then they said the worst words you could imagine – we think Dylan-James has got cancer. Our world just stopped.

It wasn’t until the Monday we got absolute confirmation that it was Wilms tumour. We were in shock. There were no signs or symptoms, which is why it was such a shock. In hindsight, I had noticed his tummy was growing a little, but I thought that was just normal for a child of his age. It was so silent, we had no warning.

Within 24 hours of arriving at A&E we were told the worst news ever, that our little boy had cancer. Being told he had cancer turned our world upside-down, we were transported to another world, into this oncology world. We were suddenly being told he’d need to have chemotherapy straight away to shrink the tumour, and then have his kidney removed, and then would start of a year of treatment of high dose Chemotherapy and Radiotherapy.

We were catapulted into this journey, everything else just stops. Needless to say, I didn’t go back to work on Monday. We were now in the world of the Royal Marsden. You’re in this crazy oncology bubble, you can’t even say every day is different, every hour is different with your child depending on their blood counts, or the side effects of chemotherapy. It’s a world-wind.

We never ever thought we would lose Dylan-James. One of the things for us was that Wilms is curable, it wasn’t a terminal cancer diagnosis. I think maybe in hindsight that’s what kept us going. I just thought, all we had to do was get through this 12 months of treatment, and our lives would go back to normal again. Throughout, his scans were coming back clear, so I never thought I’d lose him.

Dylan-James

Dylan-James was due to finish treatment in the July, but in the May we were going in for chemotherapy and he said his tummy was hurting. I explained that to the team at the Royal Marsden and they said his counts were fine and that we can still go ahead with the planned chemotherapy. Call it my ‘mummy’s intuition’ but I thought something wasn’t right. It took a few days but they finally agreed to do a scan to check it wasn’t anything bad.

Every time Dylan-James had a scan, he had to have a general anaesthetic, because of his young age. So scanning obviously wasn’t a straightforward thing to do. The scan showed that the tumour had not only come back in the original place, but it had also spread to his lung. And at that point you’re in such a different ballgame. They described it as relapse on treatment – that was something so new to us because I’d heard of children who are in remission relapsing but I had no idea it was possible to relapse whilst you’re being treated. Although he was already on the highest dose of chemotherapy, we then had to start to think about a different cocktail of chemotherapy, and we were really hopeful that would work but sadly it didn’t.

During our stay on the ward we were blue-lighted from the Royal Marsden Hospital to intensive care at St Georges Hospital. It wasn’t great. He was appearing really well, but I can remember the consultant showing us Dylan-James’ scans and he couldn’t really medically explain how Dylan-James was up and talking and laughing. But there just wasn’t anything else they could do for him.

That’s when we were told we’d have about two months left with him. We were absolutely crushed. We set up a plan of being home for a week, and then in Shooting Star Children’s Hospice for a week, and alternating like that for the remaining time we had left with him.

We just felt we wanted to take him home from hospital, and we did, and it was amazing. He was home with us, and he saw all of his toys. We had a wonderful week at home and made special memories. Our CLIC Sargent Social Worker Shelley had arranged through a charity to get Dylan a big toy kitchen which he absolutely loved as he loved cooking like Disney’s Ratatouille, it came everywhere with us – St Georges Hospital, Shooting Star Hospice, everywhere. Those things are so treasured, you can’t think of those things, so having your CLIC Sargent Social Worker thinking about how charities can help you make precious memories is so lovely.

At that time, Shelley was researching ‘Make A Wish’. Dylan-James wanted to see Disney as he loved Lightening McQueen and Olaf from Frozen, but being that poorly he couldn’t go, so instead he wanted to go to CBeebies World. That was all arranged by CLIC with St Georges and booked for him to stay in Mr Tumbles room at the hotel, but again, mummy and Daddy intuition, we felt it was so far away to travel too, we just thought something wasn’t right so we didn’t go. He really came out of himself that week we were at home. We drove to Shooting Star hospice to spend the second week there, but after an hour of us arriving there he passed away. Dylan-James passed away in my arms holding his daddy’s hand. We just cuddled him with him holding his favourite superhero ‘Catboy’ toy and ‘Catboy’ blankets. We are so grateful he did spend his last night and morning at home and he was now at peace in the Hospice Tranquillity Suite.

Shelley came and saw us at the hospice in the early days while we stayed with Dylan-James after we lost him. The next time I saw her was at Dylan-James’ funeral. We had about 300 people at Dylan-James’ funeral, and some of them were from the Royal Marsden Hospital, Shooting Star Hospice and St Georges Hospital, so it wasn’t just family, it was a lot of the professionals who had helped us on Dylan-James’ journey, we were deeply moved by that. I remember thinking, my goodness, how can a 3 year old have 300 people at their funeral? To be on earth for such a short amount of time and to have that impact, and touch so many people. I would be happy if 30 people came to my funeral! At the funeral we had collection tins for CLIC Sargent, and instead of flowers we asked people to donate money through a Just Giving page we’d set up for CLIC Sargent and the other charities which had supported us.

As a Head Teacher, my experience previously of children with cancer was when we did something at school around Red Nose Day or Children in Need, and you’d see a child with cancer on TV. I would never have imagined that would be our son Dylan-James. I think sometimes I’m still shocked by the diagnosis, even though we lost him, I don’t think I’ve even recovered from that first initial cancer diagnosis.

At Dylan-James funeral we had the song ‘Beautiful Boy’ by John Lennon, it’s a song Dylan-James use to play to Elliott. And one of the lines is “Life is what happened to you when you’re making other plans”, and that’s such a powerful message. We were busy making our family’s plans of hopes and dreams for Dylan-James bright future ahead and overnight our whole world changed. Life gave our little boy childhood cancer.

When you lose your child you try and reconnect with this world without your child, and I think that’s the biggest thing that breaks you down. As a bereaved mum everything hurts so how can you connect with anything anymore except feeling deep grief and heartbreak forever.

It’s important for us to share Dylan-James’ story because people don’t want to think about cancer, or a child having cancer, or death. Even though death is the one thing we all know will happen to us. The trouble is, for a bereaved parent, putting your child together with cancer, and dying, people really don’t want to face that. But this is our reality, and it will be forever. This is a heartache that is never going to go away for us.

Dylan-James painting in the play room at the Royal Marsden

CLIC Sargent support

It was the Monday or the Tuesday of Dylan-James’ diagnosis that Shelley came to visit us on the ward. She introduced herself and said she was from CLIC Sargent, explained she was here to support us, and she was really, really helpful.

She visited us at St Georges Hospital, which was our shared-care hospital. But she also visited us when we were at the Royal Marsden – most times we were there for chemotherapy or Radiotherapy she’d come and see us. We were always in the playroom because of Dylan-James’ age, and she would come in and talk to me while he played, check in on us, see if we needed anything. And she did that throughout the whole 11 months of his treatment.

She gave us information about things I didn’t know about, really practical things like applying for a blue-badge or disability living allowance. You can’t think, you can’t think of all of these things. Dylan-James was, and still is, our absolute universe, so you can’t think about anything else apart from your child’s cancer. So Shelley’s support was so helpful in such a practical sense. She wrote letters to Dylan-James’ Nursery to say he’s been diagnosed with cancer and this is what it involves and this is why he can’t attend anymore due to his immunity and treatment plan.

When we had meetings with the consultant she’d sit in, because sometimes when a consultant is talking to you, you think you’re listening but you can come out and question whether you heard things right. It’s just so hard when it’s about your child, you’re trying to be strong for Dylan-James.

She had 1-1 sessions with me including phone calls checking in to make sure we were OK. And particularly at the end. She visited us at Shooting Star Hospice, and she came to Dylan-James’ funeral, which I will forever be grateful for. Knowing she was there meant so much to me, Shelley was a really significant part of Dylan-James’ journey. We had a horse and carriage at Dylan-James’ funeral and I was walking behind it, I looked around and she was there. And since then, Stef has supported us as Shelly left for Maternity leave.

Stef has offered 1-1 bereavement chats with me, she put me forward for CLIC Sargent’s parent’s bereavement group which I was part of for six months. She has invited me to various bereaved mum events – I’ve been to three events (jewellery making in Brighton, afternoon tea, and a pottery making day). What’s so sensitive about these events is that, stating the obvious, you’re with other mums who are in the same position as you, but it also just gives you time to be creative, and it’s your time to think about your child.

I returned to work on a phased return after the devastation of losing Dylan-James and through letters Stef wrote to my Schools Trust, I was able to negotiate a phased return that suited me. Some mornings I start at 10am so I can go to the cemetery and light Dylan-James’ lanterns, and then I feel set up to face the rest of the day leading my school. CLIC Sargent have supported me with that. My School have always been very supportive but it’s been really helpful to have Stef to support their understanding of what it is like for a bereaved mother returning to work particularly as I have a job surrounded by children Dylan-James’ age

Stef still continues to be there – she’s just an email or a phone call away. It doesn’t feel like I’ve lost Dylan-James and the support has stopped, because lots of things do stop after your child passes away. People come to the funeral and then that’s it. Obviously for us, that is our reality, this heartache is just here all the time. We still look for Dylan-James every day and talk about him every day so it’s nice that the support from CLIC Sargent hasn’t stopped. It can feel like, everyone’s around for your treatment, then you lose your child, and that’s it. The constant has been that continued support from CLIC Sargent. This has been invaluable.

For me, with CLIC Sargent, it was the practical side of things we needed help with. I needed to just be there for Dylan-James. I couldn’t be ringing the Nursery and explaining why he wasn’t coming back. The books from the CLIC Sargent office at the Marsden about Wilms tumour were so helpful to read, and books that I could share with Dylan-James. Or the ‘Chemo Duck’ Shelley got us from the play specialists for Dylan-James and one also for Elliott. This helped him see he wasn’t alone now wearing a bandana and with a Chemo ‘wiggly’ line attached to him.

I was so confident that Dylan-James was going to beat this cancer that we had even booked theatre tickets for various Cbeebies shows for Dylan-James for after his treatment had finished.  These were our end of chemo celebrations as we only had one month left of treatment to go. When we had our final days with Dylan-James we still had all these tickets, and it was Shelley that rang all theatre companies to say that we weren’t going to be able to use the tickets. A few of the theatre companies actually sent us gifts for Dylan-James. But again, that was Shelley on the phone on our behalf. She did that for us.

Even now, CLIC Sargent has helped me get boxes of the CCAM pin badges in my School’s Welcome entrance for visitors to put money into the collection box and take a pin. Now anytime I walk into my classrooms and see a Gold Ribbon on any of my pupil’s jumper or teacher’s lanyards, I smile to myself, knowing that Dylan-James’ legacy continues and he is still helping to raise awareness of Childhood Cancer and CLIC Sargent. He is still continuing to be the brave hero we always knew he was and will continue to be forever.

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