Supporting families of children and young
 people with cancer in the East Midlands

Please note: this story discusses the loss of a child, grief and the impact of bereavement.

 

The agony of losing a child is often described as the worse pain someone can go through. No parent expects their child to die before they do. Sadly, for some families who have a child with cancer this nightmare can become a reality. PASIC is here to support families, even when the unthinkable happens.

In this very moving Q&A we speak to Lyndon Roberts about the processes and feelings he’s gone through following the loss of his son, Larsen, who died from a brain tumour in December 2019, aged just five years old.

How did it feel to lose Larsen?

At first, I could not believe it- I was probably in a state of denial for the first few weeks and was half expecting him to ring the doorbell and come back into our lives.

I understand what has happened and how, however the one question no one can answer is why, which is probably the most challenging part.

Every day since his death has been completely exhausting and feels like climbing a mountain carrying a heavy rucksack on my back.

Grief is often described as a constantly-changing process, would you agree with this?

Larsen holding a parrot

There are three challenges to losing a child that I have experienced…

There is the past; all of the memories we had together, the present; living without Larsen and the future; what would it have been like, what would he have looked like, would he have gone to university etc.

The hardest part for me is the future; there are constant reminders in daily life that Larsen is not here and able to do all of the things he wanted to do.

I can only be grateful that we got to spend five amazing years with him and he was such a big influence on my life.

How has Larsen’s brother – three year old Jesse – coped with the loss of his big brother? Do you have any advice for talking to children about the death of a sibling?

You often hear people say things like ‘children are too young to understand what is going on’ but I would say this is completely inaccurate.

Jesse misses Larsen every day and even though he is only three, understands that his big brother is not here anymore and won’t be coming back, which is the hardest part to make them understand. He often thought we had left Larsen in the hospital, because that was the last time we saw him.

There are lots of books available that talk, indirectly, about grief and loss, which have been useful, as well as having lots of pictures to show him of him and his big brother.

How do you remember Larsen?

Dates like Larsen’s birthday have been really hard, as have events like Christmas or the anniversary of his death.

Looking through photos and videos can be a really happy experience, remembering all of the fun things we did as a family and remembering things Larsen would say and his mannerisms; equally some days that can be extremely painful.

Personally, I have tried to help some charities that have supported us, or Larsen was passionate about, to give me something productive to focus on and act as a bit of a distraction.

As a dad going through the loss of a child, do you think men process grief differently?

I think there is an expectation for men to process grief differently. We still see that with some of the services available, which are primarily targeted at women, relating to grief, loss etc.

When I think back to before Larsen was ill, if I saw a man crying in the supermarket, I would’ve thought that it was unusual to see, but now wouldn’t think anything of it.

There are still attitudes that men should keep it in and get on with things as normal but hopefully attitudes are slowly changing.

Coincidentally, I recently got involved with a local group called Men United who are a group of bereaved Dads who play football, informally, and have arranged some charity matches to raise money for local causes.

“My close friend has just lost their child, how can I support them?”… Do you have any advice based on your own experiences? Anything your friends/family did that really helped you?

I think in the first instance it is helpful to be helpful- if you can cook meals for them, do their shopping etc, any practical things that anyone grieving will not have the energy or motivation to do.

It’s also important to talk about the person they have lost and not feel uncomfortable in doing so- they were here and talking about grief is only as awkward or complicated as you make it. Everyone loses someone at some point in their life and we will all go through grief and death ourselves.

If you are not sure, I would say ask the person whether they want to talk about the person they have lost (sometimes they might not want to, as they are too sad or might be having a ‘good’ day’)- leave questions open, rather than ‘is there anything I can do for you’ as the answer will be ‘no’, unless you can bring that person back.

Larsen and his family

How have PASIC supported your family?

Probably the most important thing as a family we benefitted from was Family Support Worker Jo’s presence around the ward.

Little things made a huge difference, like a cup of tea, which probably seems really simple to people reading this who haven’t had a poorly child or had a long stay in hospital, but it really makes a huge difference.

PASIC also know the systems and how things work in the hospital, which, if you haven’t accessed any of the wards or treatment before, they can give you an explanation of things that Drs or Consultants just throw at you and leave you to process.

Larsen also loved his trips to Thomas Land, but especially Twycross Zoo! Again, these are normal things that normal families do all of the time, but when you have treatment to juggle, medicine to take at home, potentially feeling unwell, these windows of normality are massively important for children and families going through something extraordinary.

 

Seek bereavement support

Our Family Support Workers continue offering support to parents and siblings after a child sadly dies. We can also provide compassionate and ‘making memories’ financial grants, assistance with funeral costs, and fingerprint charms.

However, there are also a wide range of charities and other organisations that may be able to offer more specialised bereavement support. If you are unsure where to turn to, speak to your Family Support Worker who will be able to offer advice and relevant signposting.

Alternatively, CCLG have published a list of bereavement support charities and organisations in the UK that might be useful – https://www.cclg.org.uk/useful-links/bereavement-support